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Eubios Journal of Asian and

International Bioethics
EJAIB Vol 14 (2) March 2004 ISSN 1173-2571
Copyright ©2004 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
31 Colwyn Street, Christchurch 8005, New Zealand P.O. Box 125, Tsukuba Science City, Ibaraki 305-8691, Japan

Eubios Ethics Institute World Wide Web: http://www.biol.tsukuba.ac.jp/~macer/index.html


Official Journal of the Asian Bioethics Association (ABA) and the IUBS Bioethics Program

Contents page
Editorial: Bioethics for Informed
Editorial: Bioethics for Informed Citizens across Cultures 41
A National Survey of Physicians’ Attitudes toward Protecting Citizens across Cultures
Human Research Participants in Taiwan 42 - Darryl Macer, Ph.D.
- Yaw-Tang Shih et al. Director, Eubios Ethics Institute
Artificial Insemination and happiness 48 Affiliated Professor, United Nations University
- Yali Cong Email: macer@biol.tsukuba.ac.jp
Ethics in Domestic Violence Research 50
- Omur Elcioglu,Oztan Oncel, Ilhami Unluoglu This issue of the journal includes a range of papers from Asia
Clinical Ethics Discussion 4: Urgent “lifesaving” clinical research 52 with a variety of medical ethics questions, revealing the breadth
- Atsushi Asai and Koichiro Itai of activity in different cultures on considering bioethics. I was
Experimental Medical Treatment for a Terminal Pediatric recently told that a discussant at an international conference in
Patient: Commentary on Asai & Itai - Frank J. Leavitt 57 Europe said that there was no bioethics activity in Asia. As
The Development of Health Insurance in Turkey and its evidenced by the collection of over 1000 papers on bioethics in
Importance from the Point of View of Medical Ethics 58 Asia now published by Eubios in EJAIB and in conference
- Ibrahim Basagaoglu and Aysegul Demirhan Erdemir proceedings this is far from the truth. Still more action is
Biological Views of the Inexistence of Human Races 59 needed. Another step towards bioethics education is reached
- Silviene F. Oliveira and Luzitano B. Ferreira with the publication of a textbook which includes a wide range of
Cyber-pharmacies and ethical concerns over marketing authors from different countries. The 16 long chapters and 25
drugs online 61 page by page topics in bioethics have been tested in different
- Vinod Scaria countries since early 2003, and trials are expanding to more
Actualisation of the 'Philosophical Functionalism' in Bioethics63 countries this year.
- Konstantin S. Khroutski A new book has been published by Eubios Ethics Institute,
News in Bioethics and Biotechnology Macer, DRJ., ed., Bioethics for Informed Citizens across
GE Plants, GE Animals. Design molecules, Biotech & Public 66 Cultures (160pp.) There is also an on-line version <http://www.
Regn. of GMOs, Vaccines & Diseases 67 biol.tsukuba.ac.jp/~macer/betbk.htm> Further copies can be
AIDS and STDs, Bioremediation, Environmental Issues 69 obtained from the Eubios Ethics Institute. For teachers involved
Biodiversity, Animal Rights, Brain Function 70 in the Bioethics Education Project, this book is free. I can send
rDNA, Food Safety, Disease Risks & Drugs 71 multiple copies for trials in classes if teachers will send feedback
Patents &Business. Birth Control, Embryo Status, Cloning 72 from these trials. The textbook signals the second year of a
ARTs, Fetal environment, Genetics, Methods 73 project on bioethics education teaching, see the site
DNA Fingerprinting &Privacy, G.Screening, Gene Therapy 74 <http://www.biol.tsukuba.ac.jp/~macer/betext.htm> We still
HGP, Medical ethics, Law, Scientific ethics 75 welcome further chapters, and translation of materials are being
Euthanasia, Organ Transplants, Costs, Internet 76 made available as they are sent to me.
Human behaviourome project Please note that the CD/DVD and teaching resources, and the
ABA Membership, IAB Genetics Network, Conferences 77 proceedings of the ABC5 conference are still under preparation
Ordering Information 79 for on-line, CD and printed versions. Please monitor the web
Send papers to the editor in electronic form if possible. site as these files will be added. Please note that it is an open
Please use reference style used in News section, do not use project, and anyone who has teaching resources that they
automatic footnotes or endnotes. Papers are peer reviewed. would like to share into this open-access resource free of
Editorial address: Prof. Darryl Macer copyright for teachers to download, modify for their particular
Institute of Biological Sciences, University of Tsukuba class needs and culture, and share back into the common
Tsukuba Science City 305-8572, JAPAN resource, is welcome to join. Many languages are desired.
There is also a yahoo listserve on bioethicseducation, as well as
Fax: Int+81-29-853-6614
a students discussion listserve. Please join the project, and the
Email: macer@sakura.cc.tsukuba.ac.jp international bioethics education network that had its first
Deadline for next issue is 15 May, 2004. meetings in mid-February, 2004 during ABC5/TRT9 conference.
42 Eubios Journal of Asian and International Bioethics 14 (March 2004)

Key Words: Human Research Participants Protection; Ethical


A National Survey of Review; Informed Consent; Physicians; Attitude; Behavior.

Physicians’ Attitudes toward Introduction


Medical scientists devote their whole careers to the
Protecting Human Research prevention and treatment of disease, and thus to the
improvement of human health. However, prior to the 1960s,
Participants in Taiwan relatively little attention was given to standards and practices of
bioethics in human research (Moreno & Lederer, 1996). Since
- Yaw-Tang Shih*, M.D., Dr. P.H. that time, a prolific literature has accumulated on ethical
Director, Division of Health Policy Research standards for human research, in particular on clinical trials.
National Health Research Institutes, Taipei, Taiwan, R.O.C. Much of the research is macro-level analysis. Some reviews
,
2F, 109, Min-Chuan East Road, Sec. 6 deficiencies of regulations or policies (Shalala, 2000) (McCrary,
Taipei 114, Taiwan, R.O.C. Anderson, Jakovljevic, Khan, McCullough, Wray et al.,
- Shu-Fang Shih, M.B.A., M.S. 2000),(Amdur, 2000),(Moreno, Caplan, & Wolpe, 1998), others
Research Assistant, Division of Health Policy Research provide an analytical framework for evaluating ethical factors in
National Health Research Institutes, Taipei, Taiwan, R.O.C. clinical studies (Emanuel, Wendler, & Grady, 2000). Based on
- Nan-Shen Chen, M.S. such reviews, several reform proposals have been proposed
, ,
Research Assistant, Division of Health Policy Research (Shalala, 2000) (Bodenheimer, 2000) (Moreno, Caplan, &
,
National Health Research Institutes, Taipei, Taiwan, R.O.C. Wolpe, 1998) (Rennie & Yank, 1997). However, as emphasized
- Szu-Hsien T. Lee, Ph.D. in the US National Bioethics Advisory Commission 2001 report,
Assistant Professor few empirical studies address the significance of reform and
Department of Humanities and Social Sciences evidence-based policymaking. In addition, very little has been
National Defense Medical Center, Taipei, Taiwan, R.O.C. done to study investigators' attitudes toward HRPP. Regulation
- Cheng-Shing Chen, M.D., Ph.D. has been used as a tool in protecting human research
Chairman, Daniel Executive Holding Corp, Taipei, Taiwan, participants, but recent studies have shown that the role of
R.O.C. investigators or physicians’ attitude should not be overlooked
,
- Matthew Tayback, Sc.D. (Moreno & Lederer, 1996) (Anonymous, 1996). Povl Riis (Riis,
Professor, Department of International Health 1995) pointed out that a scientist’s moral values and behaviors
The Johns Hopkins School of Public Health is one important ethical demand.
*Address all correspondence to: Dr. Yaw-Tang Shih, Email: While ethical issues surrounding human research have
annsshih@nhri.org.tw been intensively researched and discussed among the
members of the international medical community in particular,
Abstract there remains a gap between medical advancements and the
To understand the attitudes, awareness, subjective norms protection of participants in human research in Taiwan. Before
and intention of physicians toward human research participant the 1986 Medical Care Act (MCA), there was no official
protection (HRPP), we surveyed 2,425 physicians between protection of participants’ rights in clinical trials. This Act only
September 2000 and January 2001 in a cross-sectional survey covers the trial studies of new drugs, new medical techniques or
of 11 medical centers and medical school hospitals in Taiwan. new medical devices that involve human participants. In 1993,
Response rate was 81%. Physicians’ attitudes, awareness, the Department of Health (DOH) required a local clinical trial
subjective norms and intention to comply with HRPP report in order for a new drug to be registered. In 1996 DOH
requirements were measured via a self-administered developed Guidelines for Good Clinical Practice (GCP). Only in
questionnaire. We found that while 90% of respondents had 2000, when the first drug clinical trial liability insurance policy
never heard of IRB, Nuremberg Code, Declaration of Helsinki, was approved by the Ministry of Finance’s Department of
Belmont Report, U.R.M.S.B.J., or JIRB, more than 78% of total Insurance, was a policy created to assure compensation for
respondents showed strong response in 4 items of behavioral research injuries as stated in the GCP.
belief about the significance of HRPP in intervention studies. The "Joint Institutional Review Board" (JIRB) was jointly
Around 22% did not recognize IRB reviews as important for established in 1997 by five medical centers and the Cancer
those intervention studies not regulated by the existing Medical Research Alliance. The JIRB was established with the intention
Care Act. In the measure of physicians’ beliefs toward HRPP of facilitating trial research approval. The idea was that if a trial
as related to interaction studies, over 59% favored requirements were conducted in a hospital that participated in the JIRB, and
that research participants be well informed and that informed that trial was approved by the JIRB, then it would not be
consent be obtained. Only 43% believed an IRB review was necessary for the investigators to obtain the approval from the
unimportant in conducting an interaction study. Physicians hospital, itself. Otherwise, the investigators would need to obtain
report that they place more attention on selecting patients approval from the hospital where the trial was to take place.
carefully than on fully informing research participants, obtaining Only in 2000 did government-funded research require IRB
informed consent or submitting a proposal for IRB review. approval. At this time the DOH began to require IRB approval
Based on our regression results, physicians’ attitudes were with grant application. Because government-funded agencies
highly correlated with their intent to be involved in IRB reviewed used the term “human experiment” in their grant application
process. announcements, these policies are only considered applicable
The results of our study suggest that physicians in Taiwan to clinical trials using human participants. Therefore, the
are not now generally aware of HRPP. Attitudes about regulations and guidelines extend to other research only to the
protecting research participants varied among different types of extent that investigators or their institutions voluntarily follow
studies. This consistent lack of awareness combined with a them.
lack of official regulation shows that the HRPP system in Taiwan With the increases in R & D in medical science and
may not now be able to adequately protect the safety and rights technology, and with Taiwan’s 2002 accession to the WTO, the
of human research subjects. In addition, our evidence shows government, IRBs, research institutes, universities, and
that by changing physicians' attitudes towards HRPP, we may professional associations will be required to pay increasing
accelerate progress in developing, improving, and implementing attention to human research participants protection. Since the
HRPP. individual research investigator is an important key factor within
the HRPP system, the main objective of this study was to
survey the awareness and attitudes of physicians regarding the
Eubios Journal of Asian and International Bioethics 14 (March 2004) 43

protection of participants in human research. By assessing


these measures, the behavioral factors that might influence the Procedure
prospect for successful implementation of a HRPP policy can be An official letter was sent to each hospital before
identified. conducting the survey to solicit the hospital’s support. A one-day
training program was held in each hospital so that each of the
Methods 126 nurses or administrative staff serving as the facilitators
Participants could go through the process of obtaining informed consent
A total of 2,425 physicians were surveyed between from physicians, distributing questionnaires and collecting
September 2000 and January 2001. Because Taiwan’s MCA responses. Administration of the questionnaires was smooth.
specifies that only teaching hospitals are permitted to conduct This research was approved by the JIRB in October 2000.
human experiments, according to the hospital accreditation
report in 1999 only 12 hospitals were eligible. Of those, 11 were Statistical Analysis
willing to participate in our survey. The participants of this study Statistical analysis was performed using SAS software.
were physicians who had worked in these medical centers or Univariate analyses were performed on each variable.
medical school hospitals since at least 2000. Because new staff Cronbach α coefficients were calculated to determine the
members are normally not familiar with institutional policy, this internal consistency of the measures. Two tailed t-tests were
study excluded the residents who self-reported that they had applied to test whether, after multiple comparison adjustment,
worked for less than one year in a medical setting. the physicians’ attitudes, subjective norms, and intention
differed at a 5% level between intervention and interaction
Instrument studies. Multiple regression analysis was used to test the
A self-administered anonymous questionnaire was independent associations of awareness, attitudes, and subject
designed to measure a physician’s awareness, attitudes, norms with participants’ intention of complying with the IRB and
subjective norms and intention to comply with HRPP obtaining informed consent.
requirements. In order to assure reliability and validity of the
measurement instruments, the original questionnaire was then Results
administered to two pilot groups from June to August 2000 in Characteristics of Participants
Taipei Medical University – Municipal Wan Fang Hospital. Surveys were distributed to 2,425 physicians between
Five domains were assessed in the final questionnaire and September 2000 and January 2001. There was an 81%
used in this study, including socio-demographic data, response rate.
awareness, attitudes, subjective norms, and intentions. The Major descriptive statistics of responding physicians are
socio-demographic variables consisted of age, gender, given (Table 1). Participating physicians had a mean age of
education, medical specialty, current job position, medical ethics 36.5 years and 86% (2,086) were male. Sixteen percent of
courses taken, and research and ethics review experience. them held advanced research degrees (MS or PhD), and 52%
There were 6 items on HRPP awareness. Data for these were attending physicians. Twenty-five of the physicians had
items were collected on a 3-point semantic-differential scale, i.e. experience conducting research in other countries, and 4.5%
“never heard of it”, “heard of it but not familiar”, and “heard of it had experience in ethics review. Most physicians had taken
and familiar.” medical ethics courses that were elective or required by their
A total of 8 items, rated on a 7-point scale, were generated schools. Of those who met our inclusion criteria mentioned
to assess physicians’ attitudes toward HRPP. Each physician above, 81% could be contacted.
rated the importance of these 4 items: participants’ risk and Except for measures of awareness and subjective norms,
research benefit; obtaining informed consent; fairness in Cronbach α coefficients were calculated for all four research
selecting research participants; submission of proposal to an studies. Four measures had a high internal consistency (Table
IRB. For each one they also rated the importance of the legal or 2).
moral consequences of not considering these four items. The
attitude score was generated by the sum of the multiplication of Physician Awareness of HRPP-related Information
each belief and corresponding evaluation item (Ajzen & Over 90% of physicians were unfamiliar with international
Fishbein, 1980). ethics codes or standards (Table 3). JIRB was the most familiar
Subjective norm scores were also rated on a 7-point scale, term, perhaps because it is the domestic review board for
coded -3 to 3. Physicians rated their normative beliefs about human experiments. Over 90% of physicians, however, were
how much importance their colleagues or peers gave to having unaware of its existence. The Belmont report was the least
a research proposal go through the IRB review process. Then familiar of the terms, at only 0.9%.
they were asked their own attitude toward these actions of their Physicians who had been IRB members or were active IRB
peers. Questions about whether their colleagues or peers members in 2000 were found to be significantly more aware of
would inform hospitals or patients before conducting research international ethics codes or standards, though 60% of this
had choices also coded from 1 to 7. The subjective norm score group were not familiar with any of the international ethics codes
was then calculated by summing up the products of normative or standards asked.
belief and motivation to comply and the scores of further
questions asked for each person.
Physicians’ intention regarding HRPP was also measured
on a 7-point scale. It was determined by asking, “Before
conducting a study in the future, how likely would it be for you to
have the research project reviewed by the (J) IRB or the Ethics
Review Committee (ERC)?” and “Before conducting a study in
the future, how likely is it that you would obtain the informed
consent of the patients or participants in advance?”
Because of the limited effect of MCA on HRPP, physician
responses to attitudes, subjective norms and intention may vary
depending on the kind of study. Therefore, the study questions
were divided into four kinds of research: (1) intervention study –
regulated by Taiwan MCA; (2) intervention study – not regulated
by MCA; (3) interaction study – observation; and, (4) interaction
study – survey.
44 Eubios Journal of Asian and International Bioethics 14 (March 2004)

Table 1: Characteristics of physicians in 11 medical school hospitals / medical centers (MSH/MCs) in Taiwan
Characteristic n %
N 2,425
Specialty
Primary care or internal medicine 1,036 42.7
Surgery 528 21.8
Psychiatry 56 2.3
Others 663 27.3
Dental 142 5.9
Gender
Female 339 14.0
Male 2,086 86.0
Education Degree
Bachelor’s 2,022 83.6
Masters Degree 216 8.9
Ph.D. 181 7.5
Current position
Resident physician 769 31.7
Chief resident physician 406 16.7
Attending physician 880 36.3
Vice superintendent or superintendent 28 1.1
Head of the department 292 12.0
Other 50 2.1
Experience in research abroad 596 24.9
Medical ethics courses taken (mandatory or compulsory) 1,833 75.6
IRB member (previous and inactive) 108 4.5

Table 2: Internal consistencies of physicians’ attitudes, intentions and subjective norms

No. of items Cronbach Alpha


Variables
Behavioral intention 2 0.73a 0.77b 0.82c 0.80d
Awareness 6 0.82o - - -
a
Behavioral attitude 8 0.74 0.76 b 0.79 c 0.78 d
Subjective norm 4 0.71 b 0.75 c 0.58 d -
a: Intervention Study - Regulated by Medical Care Act
b: Intervention Study - Not regulated by Medical Care Act
c: Interaction Study - Observation
d: Interaction Study- Survey
o: Overall
-:Indicates not applicable

Table 3: Physicians’ awareness of Human Research Participant Protection (HRPP) information

All Physicians IRB Member


*
Never Yes p-value
Awareness of HRPP Heard of it and familiar n (%)
Joint Institutional Review Boards 239 (9.9) 175 (7.6) 64 (61.0) <0.01
IRB 144 (6.0) 105 (4.6) 39 (37.1) <0.01
Nuremberg Code 43 (1.8) 32 (1.4) 11 (10.5) <0.01
Belmont Report 21 (0.9) 14 (0.6) 7 (6.7) <0.01
Declaration of Helsinki 151 (6.3) 113 (4.9) 37 (35.2) <0.01
Uniform Requirement for 213 (8.8) 171 (7.4) 42 (40.0) <0.01
Manuscripts Submitted to
Biomedical Journals
*:Chi-square test
Eubios Journal of Asian and International Bioethics 14 (March 2004) 45

Table 4: Physicians’ attitudes, subjective norms and intentions regarding human subject protections
(Percentage of physicians who think the statements on the left are important, agree or serious) n (% of those who answered)

Items
Behavioral Attitudes Intervention Interaction
Behavioral beliefs A B C D
When conducting studies of the types listed on the right, we should 2,322 (97.4) 2,147 (90.3) 1,475 (62.1) 1,394 (58.6)
fully inform the patients or subjects (including interviewees) of the
study’s purposes and methods, the possible benefits of participating
in the study, and the potential risks and side effects induced by the
study.
When conducting studies of the types listed on the right, we should 2,335 (98.0) 2,170 (91.2) 1,506 (63.3) 1,500 (63.1)
obtain the informed consent of the patient or subject (including
interviewees) or his (her) guardian in advance.
When conducting studies of the types listed on the right, the 2,055 (87.0) 1,995 (84.6) 1,812 (76.9) 1,772 (75.2)
subjects shouldn’t be involved in research solely for administration
convenience, or because they are easy to manipulate as a result of
their illness or socioeconomic condition.
The draft plans of studies of the types listed on the right must be 2,205 (93.1) 1,855 (78.5) 1,005 (42.6) 851 (36.1)
reviewed and approved by the (Joint) Institutional Review Board or
Ethical Review Committee in advance.
Evaluation of behavioral outcome
When conducting studies involving human subjects of the types 2,255 (94.7) 2,221 (93.3) 1,965 (82.7) 1,896 (79.8)
listed on the right, do you think it very important that researchers
should end a study immediately if it is found that the study has
adverse effects (e.g., infringement of privacy or side effects) on the
patients or human subjects (including interviewees)?
When conducting studies involving human subjects of the types 2,271 (95.3) 2,120 (89.0) 1,344 (56.6) 1,226 (51.6)
listed on the right, do you think that not obtaining informed consent
from subjects (including interviewees) will have serious
consequences?
Do you think it very important to assess carefully the risk and the 2,077 (88.1) 2,048 (87.0) 1,783 (75.7) 1,705 (72.5)
expected benefits before selecting subjects (including interviewees)
such as children, indigenous people, patients without behavioral
self-consciousness and those with mental retardation?
Making informed consent of the patients or subjects (including 988 (41.6) 1,009 (42.6) 1,119 (47.2) 1,115 (47.1)
interviewees) a prerequisite will complicate the administration
process and deter the study.
The procedure of review by the (Joint) Institutional Review Board or 511 (21.7) 572 (24.3) 749 (31.8) 767 (32.6)
Ethical Review Committee in advance of studies of the types listed
on the right will deter a study’s smooth progress!
Subjective norms
Normative belief
Do your colleagues or friends think it important to have the (Joint) - 362 (74.9) 162 (33.0) 93 (23.2)
Institutional Review Board or Ethical Review Committee review
studies?
Motivation to comply
If your colleagues or friends think it important to have the (Joint) - 279 (84.3) 117 (80.1) 69 (77.5)
Institutional Review Board or Ethical Review Committee review
studies, do you agree with them?
According to your estimate, will they inform the patients before - 364 (69.6) 289 (52.2) 290 (65.2)
conducting studies?
According to your estimate, will they inform the hospital before - 280 (51.6) 254 (46.5) 192 (44.3)
conducting studies?
Behavioral Intention
Before conducting a study in the future, how likely would it be for 2,198 (93.3) 1,972 (83.8) 1,190 (50.7) 1,080 (46.0)
you to have the research project reviewed by the (Joint) Institutional
Review Board (IRB) or the Ethics Review Committee (ERC)?
Before conducting a study in the future, how likely would you obtain 2,286 (96.4) 2,135 (90.2) 1,438 (60.7) 1,355 (57.3)
the informed consent of the patients or subjects in advance?
a: Intervention Study - Regulated by Medical Care Act
b: Intervention Study - Not regulated by Medical Care Act
c: Interaction Study - Observation
d: Interaction Study- Survey
-: Indicates not applicable
46 Eubios Journal of Asian and International Bioethics 14 (March 2004)

Table 5: Physicians’ intention, attitude and subjective norms toward HRPP


Intervention Interaction
a b c d a: Intervention Study - Regulated by Medical Care Act
b: Intervention Study - Not regulated by Medical Care Act
(Mean ± S.D.)
c: Interaction Study - Observation
Specified by research type
d: Interaction Study- Survey
Behavioral Intention (Range from 1 to 7)
-: Indicates not applicable
IRB 6.5 ± 1.0 6.0 ± 1.3 4.7 ± 1.8 4.5 ± 1.9
Informed consent 6.6 ± 0.8 6.2 ± 1.2 5.1 ± 1.8 5.0 ± 1.8
(n) (2,385) (2,382) (2,380) (2,382)

Behavioral Attitude (Range from 1 to 49)


At-score 40.2 ± 7.3 36.4 ± 8.9 27.0 ± 10.6 26.1 ± 10.7
(n) (2,385) (2,382) (2,380) (2,382)

Subjective Norm (Range from –2.3 to 7.6)


Sn-score - 4.5 ± 1.9 3.2 ± 2.1 3.1 ± 2.0
(n) (568) (569) (459)

Non-specified by research type


Awareness of HRPP (Range from 1 to 3)
Aw-score 1.5 ± 0.4
(n) (2,416)

Table 6: Predicting physicians’ behavioral intention by awareness, attitude, subjective norm.


Intervention study Interaction study
Regulated by MCA NOT regulated by MCA Observation Survey
β S.E. β S.E. β S.E. β S.E.
Intent to submit proposals to IRB
Gender 0.033 0.048 0.165 0.145 0.134 0.174 0.093 0.204
Experience in abroad 0.127** 0.042 0.037 0.102 -0.089 0.127 -0.045 0.154
Behavioral Attitude 0.069** 0.002 0.077** 0.005 0.101** 0.006 0.100** 0.007
Awareness 0.206** 0.045 0.103 0.107 0.121 0.139 0.167 0.164
Subjective norm - - 0.086** 0.026 0.172** 0.030 0.122** 0.038
R2 0.30 0.38 0.48 0.40
Intent to obtain informed consent
Gender 0.081 0.042 0.085 0.128 0.164 0.163 0.133 0.192
Experience in abroad 0.012 0.037 -0.104 0.090 -0.178 0.119 0.039 0.145
Behavioral Attitude 0.059** 0.002 0.079** 0.005 0.114** 0.006 0.108** 0.007
Awareness 0.039 0.039 0.005 0.095 0.015 0.130 -0.089 0.155
Subjective norm - - 0.047* 0.023 0.128** 0.028 0.097** 0.036
2
R 0.28 0.41 0.54 0.45
MCA denotes Medical Care Act * : p<0.05 **: p<0.0 -: Indicates not applicable
Eubios Journal of Asian and International Bioethics 14 (March 2004) 47

Attitude and Subjective Norms research not regulated by the MCA, subjective norms were
Attitude significantly associated with physicians’ intention.
Survey responses to the main descriptive results for
attitude, subjective norms, and intention of physicians toward Discussion and Conclusion
HRPP in the four kinds of research are summarized in Table 4. Our study reveals that physicians in Taiwan are largely
Our findings show that over 78.5% of physicians had strong unaware of research ethics and HRPP. Although current or
belief in the importance of HRPP in intervention studies in all previous IRB members showed the highest level of awareness,
four items of behavioral belief. However, over 20% of physicians the low scores (Table 5) suggest a strong need for improved
saw no importance in IRB reviews for intervention studies education, particularly HRPP, either in medical school itself or
unregulated by the MCA. Physicians’ beliefs about HRPP as continuing education.
review for interaction studies showed that almost 60% agreed In addition, physicians’ behavioral attitudes toward HRPP
with requirements to inform research participants, obtain varied among the 4 kinds of studies. A greater number of
informed consent, and fairly select research participants. physicians showed positive attitudes toward the need for HRPP
However, just over 40% regarded IRB review as important for in intervention studies than they did toward interaction studies.
interaction studies. In addition, physicians tended to consider This difference could be attributed to the nature of research
the careful selection of patients to be more important than the physicians who were experienced with or currently involved in
fully informing research participants, obtaining their informed such studies. The possible harm caused by social and
consent or submitting a proposal for IRB review. behavioral research was generally underestimated, and very
Results from evaluating behavioral outcome of intervention little importance was given to privacy or confidentiality issues.
studies, showed that more than 93% of physicians considered it Our study also showed that a larger variation existed in opinions
important to end an intervention study immediately when about the need for HRPP in interaction studies than opinions on
adverse effects occurred. For those intervention studies intervention studies. These results support a needs analysis
regulated by the MCA, over 95% of physicians considered that done by the National Bioethics Advisory Commission in 2001.
the consequence would be serious if they did not obtain They recommended that research participant protection should
research participants’ consent. A smaller percentage, about be flexible enough to be applied to widely different research
89% of physicians, considered this also to be true for settings ( National Bioethics Advisory Commission, 2001).
intervention studies not regulated by the MCA. More than 72% Regression analysis results indicate that for MCA-regulated
considered it very important to assess both expected risks and research, other factors such as experience abroad, awareness
benefits before selecting subjects. Some negative reaction was and attitudes affected physicians’ intention to submit their
shown toward the need for IRB review and informed consent of research proposal for an IRB review. Despite legislation
the patients as a prerequisite to gaining permission. Physicians’ governing human research, few physicians appear to
attitudes toward HRPP also varied between intervention and understand how the laws apply (Chief Medical Officer of
interaction studies, and these variations were larger with regard Department of Health and Department for Education and
to interaction studies than to intervention studies. Employment Home Office, 2001). This may explain compliance
problems, which still exist even in regulated research
Subjective Norms environments such as the United States. Therefore, regulations
Physicians were asked about their subjective norms may not be sufficient in and of themselves to improve the HRPP
regarding HRPP for the 3 studies other than intervention studies system in Taiwan.
regulated by the MCA. Results of analysis of subjective norms Our study also showed that a small proportion of physicians
are given (Table 4). reported that the IRB system would deter research
About 75% of physicians reported that their colleagues or development. Most respondents had positive attitudes toward
peers who were currently conducting intervention research not questions regarding analysis of risk benefit ratio, the informed
regulated by the MCA had submitted their proposal for IRB consent requirement, and fairness in selecting of research
review before beginning the studies. Furthermore, 84% of participants, while some physicians seemed to have negative
physicians reported that they agreed with this behaviors in reaction to the need for IRB review. These findings may have
others. Only a very small percentage reported that their been due to the lack of understanding or knowledge of the main
colleagues or peers submitted observational research functions of the IRB by physicians. In addition, some physicians
proposals. A much smaller percentage reported that their might have encountered previous difficulty in dealing with IRB
associates submitted survey research proposals. Almost 70% submission, or have thought that the IRB system might
of the physicians reported that their colleagues or peers would complicate the process of research and development. These
inform the participants before conducting intervention studies explanations suggest that excessive oversight may encourage
not regulated by MCA, 52% would do so before conducting disdain among researchers, as well as create an impossible or
observational studies, and 65% would do so before conducting pointless workload for the ethics review committee. However, in
survey studies. order to determine the validity of these speculations it will be
In addition, about 52% of physicians reported that their necessary to carry out research to address these new
colleagues or peers would inform their hospitals when questions. Some question whether requiring informed consent
conducting intervention studies not regulated by MCA, less than would deter research because of the increased administrative
47% would do so when conducting observational studies, and load. There is still no evidence on specific difficulties the
44% would do so when conducting survey studies. researcher may face, nor on additional costs for the research.
Since the concepts of informed consent and IRB originated
Regression Results in western countries, their applicability to Taiwan or other Asian
Means and standard deviations are given for each measure countries continues to be highly-debated. In Taiwan, there is a
(Table 5). According to the regression results (Table 6), traditional reluctance to sign documents. In itself this should not
physicians’ attitudes were highly associated with their intention be sufficient justification to avoid informing participants.
to submit proposals for IRB review and obtain informed consent Although written documents can in some circumstances be
from research participants, while their awareness was not extremely important, the process of mutual communication may
statistically correlated to intention except for regulated in fact be more important. Taiwan needs more education and
interventional studies. information dissemination not only for researchers and IRB
For research regulated by the MCA, experience in members but also for laypersons so that they can gain better
conducting research abroad was significantly associated with understanding of the meaning of participating in human
the intention to submit a proposal for IRB review. For other research and will not be afraid to communicate with researchers
or sign papers when necessary.
48 Eubios Journal of Asian and International Bioethics 14 (March 2004)

Our regression model demonstrated that physicians’ Department of Medical Ethics, Peking University Health Science
attitude was a major determinant influencing their intentions Center, 38 Xueyuan Rd. Bejing, 100083, China
toward HRPP. Currently, except for research covered in the Email: ethics@bjmu.edu.cn
MCA, all research is unregulated. In this environment physicians
may be most influenced by their colleagues and peers. Abstract
Therefore, it is essential to promote HRPP in other types of Based on a case that happened in 2001 in China, the
research not regulated by the MCA. Due to lack of evidence of author wants to show the ethical and legal issues arising from a
the effectiveness of regulatory HRPP policies and the long woman’s wish, which should be her basic right to have a child
process of establishing such a regulation, other strategies such by assisted reproduction technology. This paper attempts to
as creating a supportive environment and strengthening analyse if there is some relationship between bioethics and
institutions’ action in order to influence physicians’ attitudes in happiness, and to find if there is some reason that bioethics
general, might serve as adjuncts to HRPP reform in Taiwan. should provide help for those whoever need it. The case is
Some limitations were inherent in our study. First, not all about a woman whose husband was sentenced to death, she
physicians who met our inclusion criteria were included in our applied to court to allow her to have a child for her husband by
study sample. Second, most of the measures of awareness in artificial insemination of her husband. The conclusion of paper is
our study were based on international ethics codes or standards that there is no direct relationship between bioethics and
because Taiwan has based its development of related concepts happiness, virtue and vice of bioethics not only depends on its
on western literature. This may have resulted in some bias in moral background, but also the legal system, social psychology
measures of physicians’ awareness, but we expect that these and other social circumstances.
biases are very small. This also elicits the question of whether
western guidelines are suitable for Taiwan or other Asian In May 2001, Mrs. Zheng’s husband was put into prison for
countries. murder. In August 2001, her husband was sentenced with the
death penalty. Mrs. Zheng wanted to have a child for her
Acknowledgement husband and let the child to live with her parents-in-law, so she
The research on which this paper is based was supported applied to Zhoushan Middle Court, but her request was rejected.
by a National Health Research Institutes intramural grant (Grant Then she applied to the High Court of Zhejiang Province. Many
Number: 89A1MP). We acknowledge the support from the people paid attention to the case, but unfortunately, the court
CEOs of 11 medical centers or medical school hospitals as well took a passive tone, didn’t answer directly and Mrs. Zheng’s
as their nurses or staffs for performing an excellent job of wish came to nothing with the execution of her husband in
administering the questionnaires. January, 2002. Before the execution, the question of whether
Zheng’s wish should be met was a hot discussion topic around
References China.
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social behavior. Englewood Cliffs, N.J.: Prentice Hall,. The common idea of the society
Amdur, R.J. (2000). Improving the protection of human research It is no doubt that many people who considered the case
subjects. Academic Medicine, 75(7), 718-720.
support Mrs. Zheng, even though there is no detailed data from
Anonymous (1996). Research ethics and the medical profession: report
of the advisory committee on human radiation experiments. JAMA, a large scale questionnaire. In a class of medical students,
276(5), 403-409. among the 20 students, 3 were against Mrs. Zheng’s request,
Bodenheimer, T. (2000). Uneasy Alliance. N Engl J Med, 342(20), 1539- including one who held sympathy in morality; while 17 students
1544. supported Mrs. Zheng. In another 47 student class, 26 were for
Chief Medical Officer of Department of Health and Department for and 21 against.
Education and Employment Home Office. (2001). The removal, The main reason for support is that it is Mrs. Zheng and her
retention and use of human organs and tissue from post-mortem husband’s right. The main reason against is from the viewpoint
examination. London: The Stationary Office.
of the child’s growth, which they think it is not good to the child.
Emanuel, E.J., Wendler, D., & Grady, C. (2000). What makes clinical
research ethical? JAMA, 283(20), 2701-2711. And there is another reason, misunderstanding maybe: now that
McCrary, S.V., Anderson, C.B., Jakovljevic, J., Khan, T., McCullough, her husband’s right of life is deprived, let alone other rights. I
L.B., Wray, N.P., & Brody, B.A. (2000). A national survey of policies found that with the raising of grade of the students, the number
on disclosure of conflicts of interest in biomedical research. N Engl J of persons against also rose.
Med, 343(22), 1621-1626.
Moreno, J., Caplan, A.L., & Wolpe, P.R. (1998). Updating protections for The emerging of the issue related with the development of
human subjects involved in research. Project on Informed Consent, biomedical technology
Human Research Ethics Group. JAMA, 280(22), 1951-1958.
The issue of “whether the death row criminal ” has a right to
Moreno, J.D., & Lederer, S.E. (1996). Revising the history of Cold War
research ethics. Kennedy Institute of Ethics Journal., 6(3), 223-237. have a child is related to the development of biomedical
National Bioethics Advisory Commission. (2001). Ethical and policy technology. Before, people couldn’t raise such a question or had
issues in research involving human participants. Bethesda, Maryland: such request because there is no possibility for a death row
National Bioethics Advisory Commission. criminal to have a child due to the punishment of depriving of
Rennie, D., & Yank, V. (1997). Disclosure to the reader of institutional freedom, and many rights, such as having a child, are mainly
review board approval and informed consent. JAMA, 277(11), 922- based on the freedom. But now, artificial insemination provides
923. the possibility to have a child without violating the jail regulation,
Riis, P. (1995). Research ethics - a widening of the scope and
even if the criminal does not has freedom.
extrapolation into the future. Journal of Internal Medicine, 238, 521-
529. Now the issue is: now that we have the technology, should
Shalala, D. (2000). Protecting research subjects -- What must be done. we use it? Just like the dream we want to fly before, but now we
N Engl J Med, 343(11), 808-810. have plane, and can use it to make our dream come true.
However, we also discuss human cloning, which we shouldn’t
do even if we have the technology and can do it. So this maybe
a similar situation.
Artificial Insemination and
The current legal views of China
happiness Issue 1: Whether the death row criminal has the right to have a
child?
- Yali Cong, Ph.D. Some people said it is a blank field, because there is no
Associate professor of medical ethics, direct and clear declaration in current law. But more people
Eubios Journal of Asian and International Bioethics 14 (March 2004) 49

opposed it, and they said: only if there is no clause in current


law to show objection, that means it is allowed. In the current Biomedical technology and happiness
Criminal Law of China, there is no clause to mention the right to Happiness is pursed by everyone, it is not only a subjective
have a child is deprived, so it means Mrs. Zheng’s husband has feeling, but connected closely with culture and its values in each
the right. But people can easily raise a question that if the special region. In China, the whole and harmonious family, the
criminal is a woman, such a request will violate the other law health and progress of child, and individual development are all
(e.g. if the woman is pregnant, she will not be executed. But she necessary factors in the formulation of happiness.
would be given the death penalty if not pregnant), so this raises Whose happiness is also a question. Some people think that
another question, and not the same issue. if their own rights are realized it is happiness, some people think
The problem is that the request of artificial insemination if they give up their rights and can obtain other people (including
was made by Mrs. Zheng, and there is no doubt Mrs. Zheng’s children, parents, other family members, and so on)’s interest in
request is reasonable, and moreover the behavior of taking the return, that is happiness.
sperm of her husband will not violate the current regulation for Due to the fact of under development of the legal system, the
the jail management. judges are facing and will face many problems which will not be
clear in current laws or regulations. Under such circumstances,
Issue 2: Now that the criminal has such a right, can this right be the moral sense and level of judges will play an important role in
realized? decision making, which will relate to the client’s happiness. In
This means the right and its realization are not the same China, many court cases show a special phenomenon, that is
thing, moreover, respecting the right and supporting the right to the color of “personal rule” behind the rule by law. It also shows
realization are also different. The latter relates to the individual’s a connection between law and politics, and the idea of some
happiness to much extent. important governors will produce fundamental effect to the
In the discussion, some experts said the realization of such outcome of judge. The situation of an undeveloped legal
right is difficult, because the doctor is not allowed to go into the system, the psychology to avoid potential problems and
jail, let alone to take the sperm. Also, the judge will not support relatively lower professional morality level, all these can explain
Mrs. Zheng’s request so easily because the worrying about the the result of the balance of two tradition and the fate of this
possible effects to society that more family members raise such case.
request and it will produce a bad effect to the children. In fact, it In fact, many people know this result at an advanced stage,
is true in the field of law, many judges will take a passive way to that is Mrs. Zheng’s request comes to nothing. To many
avoid any answer and let such request “die” naturally. people, they can just understand the result, but they also think
But many people argue that the judge should support Mrs. it is imperfect, because it is not active to protect the reasonable
Zheng’s request and which will show society the progress of law right of clients, and the most important is that such protection
in China, and they mentioned that not so many wives would like does not harm social interest at all and does not violate the
to have a child for her criminal husband like Mrs. Zheng, so the current regulation.
worrying is not necessary. The conclusion of paper is that there is no direct relationship
So, the situation is subtle: if the judge does not support between biomedical technology and happiness, virtues and
Mrs. Zheng’s request , it does not mean it is illegal; but if the vices of bioethics not only depend on its moral background, but
judge does support Mrs. Zheng’s request, it is perfect and it is also legal system, social psychology and other social
also legal. circumstances. Usually, people have to not only think whether
we should support the client’s request, but also should balance
The real psychology----the reflection of two different the possible outcomes of providing support.
traditions
Psychology argument 1: To have a child and continue the P.S. Some kind people once gave a suggestion: to ask Mrs.
generation for the big family is a strong tradition. Zheng’s husband to donate sperm to sperm bank.
We have a words in China: among the three unfilial pieties,
having no child is the worst. The original aim of Mrs. Zheng’s
request was just such an idea, she hoped the child could be a
comfort to grandparents.

Psychology argument 2: Relationship, not the individual’s right,


is the most important in current China.
The child holds very important status in the family and
society. For example, if something is good to parents but not
good to child, the common value in China is to work for the
interest of child and give up the parents’ interest. The most
important reason for those people who don’t agree to support
Mrs. Zheng’s request, not because she and her husband don’t
have right, but because this is not good for her child’s growth.
For example this child will be brought up in a single-parent-
family, the child maybe has to bear the discrimination from
others, and there is financial difficulty for family, all these will
produce bad affects to the child’s psychology. Till now, China
has not developed a common value to think about the unclear
interest of potential child or fetus, and will easily justify his
behavior of supporting the interests of persons who already
exists here, but not concern much the interest of a person who
has not existed.
Of course some people argued that this is not an absolute
factor, which will be avoided by better education and shouldn’t
be regarded as a factor for legal judgment. On the contrary, the
right of parents is clear, and should be supported.
Even the two traditions co-exist now, which one can win
depends on the values of the field of law and the judgers.
50 Eubios Journal of Asian and International Bioethics 14 (March 2004)

responsibilities of investigators who are concerned with the


Ethics in Domestic Violence health aspects of domestic violence.

Research Ethical Concerns in Research on Violence Against Women


WHO have published guidelines for addressing Ethical and
- Omur Elcioglu PhD, Safety Recommendations for Research on Domestic Violence
Osmangazi University, Faculty of Medicine, Department of Against Women (WHO,1999). Research on violence against
Medical Ethics and History of Medicine, Eskisehir, TURKEY women, however, raises important ethical and methodological
- Oztan Oncel PhD, challenges. Researching abuse is not like other areas of
Istanbul University, Faculty of Medicine, Department of Medical investigation –The nature of the topic means that issues of
Ethics and History of Medicine, Istanbul, TURKEY safety, confidentiality and interviewer skills and training are even
- Ilhami Unluoglu MD., more important than in many other forms of research. It is not
Osmangazi University, Faculty of Medicine, Department of an exaggeration to say that the physical safety and mental
Family Physician, Eskisehir, TURKEY wellbeing of both the respondents and the research team can
Corresponding Author: Omur ELCIOGLU be put in jeopardy if adequate precautions are not taken.
Email: elcioglu@ogu.edu.tr In order to guide future research in this area, WHO has
developed the following recommendations regarding the ethical
Abstract conduct of domestic violence research that build on the
Domestic violence is a multi-faceted problem and its victims collective experience of the International Researchers Network
are women from all social classes and positions. Studies on Violence Against Women (IRNAW).
involving domestic violence have been carried out by Potential to inadvertently cause distress
investigators in various disciplines, including medicine, The main ethical concern related to researching violence
psychology and social science. In this paper we discuss the against women is the potential to inadvertently cause distress
ethical responsibilities of investigators who are concerned with (Ellsberg & Heise, 2002:1599-1604). New and rapid
the health aspects of domestic violence. developments in science and technology create new ethical
The physical safety of respondents and interviewer from problems. When scientific studies are carried out on human
potential retaliatory violence by the abuser is of prime beings, scientific ethics may clash with medical ethics. The
importance. At the same time the women, as the subject and attitude and the conduct of a scientist towards fellow scientists
beneficiary of the research, need to give full informed consent and towards individuals involved in his/her study constitute the
and ensure that the interview process is affirming and does not subject of the scientific ethics (Özgür,1995:53-58). Scientific
cause distress. It is important that research findings are fed into ethics are clearly of wider scope than medical ethics, since in
ongoing advocacy policy making and intervention activities. addition to diagnostic and therapeutic trials, some scientific
Physicians have a crucial role in health care system’s studies attempt to perform experiments on human beings.
response to domestic violence. It is not the physicians’ These experiments are valuable for discovering the causes of
responsibility to solve the problem of domestic violence. It is all domestic violence and for developing public policy to prevent it.
of our responsibility. Whatever the form of a study there are During an experiment, extremely confidential information may
certain basic ethical principles (respect for people, non- be collected about participants. The use and dissemination of
maleficence, beneficence and justice) that investigators should this information requires special sensitivity to the circumstances
follow. of the victims.
Key words: Domestic Violence, Investigators, Ethical Minimising risk to respondents
responsibility The WHO guidelines provide recommendation for minimising
risk to respondents. It is well-known that female victims may feel
Introduction deeply ashamed, experience extreme generalized fear, and be
Domestic violence is a complex problem. Studies involving filled with anxiety that they will be victimized again. Some
domestic violence have been carried out by investigators in victims sufficiently overcome their fears to volunteer for medical
various disciplines, including medicine, psychology and social and scientific investigations. Even when they are paid for their
sciences. Some studies are concerned with records of prior participation, their coming forward is basically an altruistic act to
events and their assessment in retrospect. Some studies help others. The first ethical responsibility of investigators
involve face-to-face interviews with actual victims, using a (Aydın;2001) is therefore the protection of these volunteers.
prepared set of questions. Whatever the form of study, there are Location and Time of Investigations
certain basic ethical principles that investigators should follow. A medical or scientific study generally has a specific goal to
In 1991, the Council for International Organizations of Medical attain. The choice of a goal is normally determined by the
Sciences (CIOMS)developed a set of International Guidelines resources available to investigators. The study may target an
for the ethical review of Epidemiological studies. These institution or a particular geographic area. These targets may be
guidelines out line the basic ethical principles of epidemiological chosen because of the prevalence of the problem in the
research involving people: Respect for individuals, non- institution or among inhabitants of the area, or the target may be
maleficence (minimising harm), beneficence (maximising chosen simply because of the expectation that the execution of
benefit) and justice (Ellsberg &Heise, 2002:1599-1604). the study will be easy. In any case, in planning the study,
Family violence has a ripple effect. Those who experience it investigators must devote a portion of their resources to taking
and those who wittness it suffer physical and emotional injuries. care of the special needs of participants of the study
Those who perpetrate it also wound themselves. Violence (Tezcan,1992;Aksakogu,2001).
damages family and other relationship, often permanently. In domestic violence studies, investigators should be
Clinicians often struggle when trying to address domestic particularly sensitive to the freedom of movement of women.
violence. They may not know what to say or do. They may nor The location of the study should be chosen so that there exists
find it traumatic to listen to a patient reports. Some have trouble an extensive and accessible public transportation system for
empathizing with the victim’s helplessness (Lamberg, 2000:554- participants of the study to come to interviews with investigators.
556). Women must be free to choose interview times, and this fact
It is noteworthy that there have been many works on direct must be impressed upon them at the very outset. Transportation
violence, pointing out the seriousness of the situation many costs may put an unnecessary burden on women and therefore
women find themselves in around the world (Katherine & should be paid from the funds available for the study. If travel
Little,2000:135-141; Minow, 1999:1927-1929; Eyler & Cohen, times are long and interviews come close to meal times, women
1999:2569-2576). In this paper we discuss ethical should also be paid for meals. These compensations should be
Eubios Journal of Asian and International Bioethics 14 (March 2004) 51

offered and methods of payment clearly explained during the to factual questions, such as when the event took place, how it
initial contact with participants of the study. started, etc. Elicited facts should be carefully recorded in as
Voluntary Participation much detail as is offered by the participant. This factual
The principle of respect for individuals incorporates two orientation should generally be adopted in investigators' use of
fundamental ethical principles: respect for autonomy and language. Investigators (Malterud,1998:195-198) should avoid
protection of vulnerable people. Because of the special nature using emotionally charged words or phrases, in particular the
of domestic violence, investigators must avoid causing feelings word "violence", in the presence of the participant.
of inferiority, shame, or coercion in participants. Information Because of the special nature of domestic violence, security
provided by the participant must be voluntary. The questions of arrangements must be considered among the tools of a
an investigator must be well-prepared. As much as possible the scientific study. In individual domestic violence cases, the
investigator should avoid open-ended questions that may push potential exists for explosive events, which can endanger not
the participant into awkward silence. In the preparation of only participants but also investigators themselves. Sufficient
questions, the investigator can use for guidance many published precautions and continuous security measures must be taken to
reports of domestic violence studies. prevent such events. Experience indicates that, as a security
Participants' Understanding Of The Study precaution, it is best to interview a female victim alone without
Kant's second categorical imperative (Singer,1994;Oguz,1998) any other member of her household, if she lives in the
states "So treat humanity whether in their own person or that of household in which the violence occurred (Collier, 1994:485;
another always as an end, never means only." This is the WHO,1999).
foundational principle of medical ethics. When a victim of a Personnel and Training
domestic violence comes to a medical facility, she expects that For a scientific study, one generally gathers personnel
the doctor and his/her staff will use all the skills and tools they according to their technical abilities and trains them thoroughly
have to treat her wounds, to reduce her pain, and to restore her in goals and procedures. Investigators are then expected to
health. She is an "end" for the doctor and his/her staff. When observe whatever they are supposed to observe in an alert but
the same victim volunteers for a scientific/medical study, her intellectually and emotionally detached manner. This is not
situation changes. The study aims at goals that are independent sufficient in domestic violence studies. An investigator for such
of her person. She becomes a "means." This may have a study cannot be as detached and non-interfering as, for
unintended consequences, both psychologically and physically. example, a biologist is when the latter observes the daily
Her health and well-being may become endangered. This is struggle for survival among animal species. First, there are legal
morally unacceptable whatever the benefits of the study requirements and moral obligations when one witnesses or
(Jonsen,1989:205-208; WHO,1999). Indeed, the ethical rule learns about actual crimes. The personnel of a study are
has been clearly stated in the Helsinki Declaration of the citizens of a country and members of a community. They cannot
Association of World Physicians: health and well-being of abdicate their legal duties or tarnish their personal dignity and
patients must have priority over any scientific result or benefit. reputation for the sake of a study. Second, domestic violence
One way to avoid or reduce such unintended consequences is events can be dramatic and sensational and are, therefore, daily
to promote the subject's understanding of the study. This bread and butter for newspapers and television programs. A
amounts to removing the psychological screen that one negligent and callous misstep can result in publicity that could
normally erects between a professional and a layman. She greatly damage the reputation of the scientific community. Third,
should be informed about the goal and the methods of the study no matter how neutral and abstract the scientific aims of a
in detail. The investigator should discuss the nature of domestic violence study are, the study's ultimate goal is to
questionnaires she will be expected to fill out and explain to her modify certain social and cultural practices. Those who have a
how they relate to the scientific/ medical aim of the study. This stake in the perpetration of these practices will view the study as
(Gerbert et al, 2000: 329-331) should not be done in an a political attack on themselves and will counter-attack. Their
authoritarian or intellectually overwhelming fashion but in a targets are likely to be the characters and reputations of the
manner that puts her psychologically on par with the investigators.
investigator. She must feel free to discuss with the investigator Clearly, the personnel in a domestic violence study ought to be
any concerns she might have. She must also feel free to dedicated men and women who, either naturally or by training,
withdraw from the study at any time if she thinks her interest is have special sensitivity to human beings. The personnel must
not being well-served. It is the ethical responsibility of the include people trained and available to offer first aid if a
investigator to be attentive to the mood of the volunteer and participant of the study needs emergency medical treatment.
solicitous of reasons behind the mood (WHO,1999). The personnel must include people trained to handle extreme
Tools agitation so that they can provide comfort to a participant going
The basic tools in domestic violence studies are registration through an emotional tempest. Investigators must be informed
forms, questionnaires, and polling forms. These tools must be about the local health care system and have pre-arrangements
thoroughly tested during their preparation on control groups to with professionals in it who will take care of the medical and
make sure that they do not negatively provoke the moral emotional emergency needs of a victim. They must also be
sensibilities of participants. Investigators should not forget that trained about police and court procedures and have pre-
they are seeking and collecting information about events that arranged access to legal professionals so that they can guide a
are unpleasant, about acts that are legally and socially participant through various bureaucracies. Finally, the personnel
unacceptable, and about situations that are humiliating to the must be thoroughly informed about governmental and non-
participants of the studies. Questions intended to elicit governmental organizations that provide aid, shelter, and child-
confessions are not the best method to gather accurate care to victims of domestic violence (WHO,1999; Ferris et
information. In an interrogative atmosphere, a participant may al.,1997:851-857).
refuse to answer questions or give less than truthful answers. Use and Confidentiality Of Data
This would defeat the purpose of a scientific study. A better The information collected during a study belongs to both
strategy is to prepare multiple scenarios and ask questions investigators and participants. How it will be used must
about these scenarios. A participant is then put into the position therefore be settled at the beginning of the study by mutual
of an impartial observer offering honest opinions about consent. A consent form for the use of data, photographs, and
hypothetical situations. If it is needed, the participant's own other images must be prepared and signed by a participant at
personal history can be constructed from these comments the initial interview. This consent form must be sufficiently
WHO,1999). detailed so that future disputes may be avoided if a particular
It can happen that a participant volunteers sensitive participant withdraws from the study and requests the
information. It is then best that investigators confine themselves suppression of the relevant data.
52 Eubios Journal of Asian and International Bioethics 14 (March 2004)

It is the ethical responsibility of investigators to preserve the Research)Klinik psikiyatri 2:67-72.(in Turkish).
confidentiality of the data collected during a study. Özgür,S.(1995).Bilim etiği (Morals of science) Türkiye Klinikleri Tıbbi etik
Confidentiality is required both because of patients' rights and 3(2-3) 53-58 (in Turkish).
Singer,P.(1994), Ethics Oxford University Press,New York.
for scientific reasons. At the outset of the study, a small group of
Tezcan,S.(1992), Epidemiyoloji.Tıbbi Araştırmaların Yöntem Bilimi
investigators must be designated as the principals who will have (Epidemiology. Analysis Metdods of Medical Research)Hacettepe
access to the raw data. Computer files that contain raw data, Halk sağlığı Yayınları Ankara (in Turkish).
and rooms and cabinets that contain documents must be Thurstan,W.E.,Burgess,M.M.,Adair,C.(1999),Commentary ethical issues
secured (Thurstan et al..,1999:127-131). Participants' actual in use of computerized database for epidemiologic and other health
names should never be used on questionnaires, polling forms, research,Cronic Dis Can, 20(3):127-131.
or on various reports. Instead, codes must be developed to WHO (1999).Putting women’s safety first. Ethical and safety
identify individuals and events. Only coded and processed recommendations for research on domestic violence against
women.WHO/ EIP/GPE/99.2.
information should be made available to investigators outside
the small designated group.

Concluding Remarks
As the discussed in this paper, the challenges facing domestic
Clinical Ethics Discussion 4:
violence researchers and advocates can be viewed in the
context of 3 important trends. First, the extraordinary rate of
Urgent “lifesaving” clinical
change in social, political, and scientific understanding of
domestic violence during the past decade means that the
research
definition of the problem-and definition of success- is continually
- Atsushi Asai, MD, MBioeth., PhD.,
changing. Second, each component of an interdisciplinary
Associate Professor, Department of Biomedical Ethics, School
approach- domestic violence as a health problem, a legal
of Public Health, Kyoto University Graduate School of Medicine,
problem, and a social change problem-contributes relatively
Konoe-cho, Yoshida, Sakyo-ku, Kyoto 606-8501, Japan
unique definitions and measures of what it means to be
- Koichiro Itai, MA,
successful. Third, in each arena-health, justice, and social
Assistant Professor, Department of Philosophy and Ethics,
change- researchers and practitioners are separated by wide
School of Medicine, Miyazaki Medical College, Miyazaki, Japan
gaps in experience, professional authority and goals.
Correspondence address: Atsushi Asai, MD,
Interdisciplinary methods can narrow these gaps, reminding us
Email: aasai@pbh.med.kyoto-u.ac.jp
that outcome measures in domestic violence need to address
the status of health, justice and human rights in our
Abstract
communities (Flitcraft,1997:1400-1401).
No matter how far medicine advances, incurable disease
We must remember that women living with violence are
will inevitably exist; and the dying patient’s last resort will
already at risk. Researchers cannot eliminate this reality, just as
likewise look to medical research. In this report, we examine a
they cannot fully eliminate the possibility that further harm will
case concerning the use of experimental medical therapy on a
be caused by their study. They do, however, have an obligation
critically ill child. We discuss the ethical argument pertaining to
to carefully weigh the risk and benefits of any study, and to take
the recommending of experimental medical therapy to the family
every precaution possible to restrict possible harm and
of a dying patient.
maximise possible benefits (Ellsberg &Heis,2002:1599-1604).
Under the circumstances of having to face the impending
Universal screening, identifying risk factors,validating patients,
death of one’s own child, parents of a terminally ill child are
and documenting abuse will help prevent further abuse. We are
extremely vulnerable to suggestion and often loose the ability to
all responsible for solving the problem of domestic violence .
make a composed decision. Moreover, there exists the
possibility of not only patients, but also medical staff and
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Aksakoglu,G (2001), Sağlıkta Araştırma Teknikleri ve Analiz researchers, to fall into therapeutic misconception. Likewise, for
Yöntemleri.(Research Techniques and Analysis Methods). Dokuz the terminal patient and his/her family though, experimental
Eylül ÜniversitesiYayınları .Izmir.(in Turkish). medical therapy is often the only hope, which is, however,
Aydın,E (2001), Tıp Etiğine Giriş (Introduction to medical ethics)Pegem always accompanied by a factor of uncertainty and is
Yayınevi Ankara(in Turkish). considered to be merely an unapproximated gamble. The
Collier,J(1994), Patient rights,The Lancet 343: 485. proposing of experimental medical therapy can result in being
Ellsberg, M and Haise,L(2000), Bearing Witness:Ethics in domestic cruel by shattering the parent’s expectations of saving their
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Physician 60: 2569-2576. We examine the issues involved in proposing an
Ferris,E.l.,Norton,P.G.;et al(1997),Guidelines for managing domestic experimental medical therapy to patients who are in dire need of
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Flitcraft,A(1997), Learning from paradoxes of domestic violenceJAMA medical therapy as an “innovative treatment.” In extreme
227(17) 1400-1401. circumstances where an individual’s life is on the line, doing
Gerbert,B.,Moe,J.,Carpers,N,et al. (2000), Simplifying physicians’ nothing can be quite trying; yet, what is right is not necessarily
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Katherina,J.,Little,M.D.(2000),Screening domestic violence idetifying, Key words: vulnerability, experimental medical therapy,
assisting and empowering adult victims of abuse, Postgrad Med critically ill, cruelty, double uncertainty, and pediatric patient.
108(2):135-141.
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Vol 284.No 5:554-556. No matter how far medicine advances, incurable disease
Malterud,K. (1999), Understanding women in pain .New patways will inevitably exist; and the despair that lingers in the hearts of
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those to whom have lost a child or spouse unfortunately does
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Minow,M.(1999),Violence against women – A challenge to supreme not fade away. Likewise, the medical staff whom stand before a
court, NEJM 341(25):1927-1929. suffering patient and his/her family are faced with a feeling of
Oguz,Y.(1998),Klinik araştırmalarda etik sorunlar.(Moral problems in utter powerlessness. This runs deep for the many who are
clinical affectionate and see their work as a mission. While death that
Eubios Journal of Asian and International Bioethics 14 (March 2004) 53

lies in the wake of longevity is rather easy to accept, death of an D’s physician, Dr. I, is a specialist in autoimmune
infant or of one’s own child is seen to be subversive and absurd. diseases and is head of the department of collagen diseases.
Unfortunately, this absurdity is dealt with all too often for those He has been treating D since the very onset. Not only does he
whom are in pediatrics. Here, medical research exists as the feel professionally responsible, but also has come to feel
last hope for the many patients and their families. emotionally responsible for D.
In this paper, we examine a case concerning the use of Throughout the two years of treating D, he and D’s
experimental medical therapy (EMT) on a critically ill child. We parents have become quite close. While D has become
discuss the ethical argument pertaining to the recommending of attached to Dr. I, Dr. I has gained a reciprocal trust from D’s
EMT to a family of a dying patient. We explore: 1) how the parents. Dr. I has consulted physicians located both
parent’s initiative of consent is influenced by the critical domestically and abroad; he has reviewed the most recent
situation; 2) the commission/omission of treatment; 3) the literature in the field. All of his efforts, however, have come up
psychology of therapeutic misconception; 4) lastly, we examine with nothing.
if it is permissible for the medical provider to propose an A few days ago, Dr. I discovered a report in a medical
unproven EMT as innovative treatment to the family of a journal for collagen diseases. This report looked at a series of
critically ill minor. cases whereby large doses of immune suppressants where
On the one hand, the argument for allowing the use of prescribed to adults with final stage disease A. The results
EMT considers the following three points: 1) the patient’s showed that while three of the 20 patients who participated in
approaching death; 2) the family and patient’s right to receive the study passed away, three also improved (1 life year
EMT; and 3) how such lies in accord with the fundamental goal increased). The remaining 14 participants showed neither signs
of medicine. On the other hand, the argument against the use of of improvement nor deterioration; yet, with continual therapy, a
experimental therapy considers the respecting of a patient’s decrease in lymphocyte count and the onset of a fever were
dignity, the factor of double uncertainty, the issue of cruelty, the observed. Ten of the patients had complications including
limits to providing access to information, the dangers of a vomiting, fatigue, and reversible liver/kidney damage. Bacterial
slippery slope effect, possible therapeutic misconception by infection was observed in five of the patients. (Note: The
medical staff, and the impartial allocation of medical resources. medicine used in this study can be covered by the national
Following a review of the various discussions and health insurance as a conventional therapy for autoimmune
arguments, we conclude by investigating the following points: 1) disorder.)
the patient’s proxy’s loss of decision making capacity; 2) the risk Dr. I believes that this EMT is D’s last and final hope. The
of therapeutic misconception by the medical provider; 3) the fact treatment, however, has never been used on a child or infant
that EMT, while seen as a last hope, is a gamble with an with disease A. Regardless of whether or not it could rescue D
unclear outcome and carries an inevitable uncertainty; and 4) from the wraths of death, treatment of D could be used as an
the cruelty of shattered expectation as associated with this observational case for a further report.
gamble. Here, we consider the distress involved in proposing Due to this treatment being nonstandard, it is necessary
EMT to those who are in dire need of a last hope; and conclude for Dr. I to submit a protocol to the IRB for approval. The IRB
that, in times of emergency, we should not recommend EMT. review process, which usually takes approximately two months,
Lastly, we investigate the role of an Institutional Review is too long for D to wait. D has only a number of days left. After
Board and Research Ethical Committee (hereafter referred to as staying up all night devising a protocol, Dr. I submits it to the
IRB). We conclude that, in circumstances similar to the case of IRB with a request for urgent review.
discussion, it is necessary for such committees to stop EMT At this stage, we need to consider the following questions:
upon an objective examination concerning the possible merits Is it ethical to recommend this EMT to patient D and to D’s
and demerits of the EMT, the shading of therapeutic family? Should the IRB prioritize the review of Dr. I’s protocol?
misconception and the possible alterative motives of the And what decision should the IRB make in this situation?
medical staff and so on. In extreme circumstances where an
individual’s life is on the line, doing nothing can be quite trying;
yet, what is right is not necessarily doing something, but rather
making the right choice.
The case we present is based on our hands on
experience; however, all peoples, diseases and treatments are
products of our imagination. Any similarities between the
presented case and real life occurrences are merely
coincidental and shall not be seen as in any way related.

2. The Case
Patient D, a five-year-old boy with a rare autoimmune
disease A has been in and out of a university hospital since the
onset of disease A. Currently, there exists no proven effective
therapy for disease A. Treatment has been limited to attending
to any and all complications.
Patient D is gradually slipping into a state of
unconsciousness; his chart shows that his blood pressure is
highly instable caused by pericarditis and myocardosis, which
eventually lead to pulmonary edema and heart failure. His level
of nutrients, his liver and kidney function continue to deteriorate
leaving little or no room for possible treatment.
Patient D’s parents have tried every possible means of
treatment, each a disappointment. Now, as they burden in
sorrow, they are having to face the arriving death of their son.
Upon hospitalization, D has undergone medical therapy
including the use of vasopressors; after undergoing a
tracheotomy, he is hooked to a respirator. Due to the use of
tranquilizers and being in a state of unconsciousness, however,
D seems to be in a painless state.
54 Eubios Journal of Asian and International Bioethics 14 (March 2004)

3. Looking Inside The Mind Of A Dying Child’s Parents incapable of knowing to which will result; we are incapable of
Sentimentality and Reason calculating which will be best for him. Omission will inevitably
We are creatures of reason. Yet, at the same time, we result in letting him pass away.
exist within an emotional web of human relationships between In these circumstances, the act of trying to save one’s
child and parent, wife and husband, man and man. Our mind child and patient is psychologically easier. For D’s parents, the
breathes in this dichotomy between emotion and reason. act of trying is essential. “By doing what we can do now, we
Likewise, at times our emotions drive our actions. As in the case won’t feel regret later,” is the greatest psychological gain
of patient D, everyone involved is emotionally invested. In cases possible. Accordingly, by saying “we may be able to doing
where a parent’s adored child is on his/her deathbed, a something” to D’s patients, we are not increasing the
“reasonable” ethical decision is often difficult to reach. possibilities, but rather, we are decisively revealing a path
In the case of discussion, patient D is dying; his where the possibility of merely waiting disappears.
physician, to whom D’s parents trust, proposes an EMT with a
15% mortality rate, 15% success rate, and 50% probability of Therapeutic Misconception
side effects. In light of D’s condition, the occurrence of side Will D’s parents be willing to agree to the proposed
effects could be lethal; the possibility of death needs to be taken innovative treatment knowing that it is experimental? Are they
into consideration. Likewise, due to this high risk associated really able to comprehend that this EMT: 1) is considered an
with the occurrence of side effects and the lack of evidence initial step towards understanding whether or not it is an
concerning this EMT on minors, it is fair to estimate a mortality effective treatment, 2) can not be considered certain to be able
rate of 30%. to save D, and 3) is clinical research that will benefit patients in
If we were in the shoes of D’s parents, how would we the future by adding to the expanding knowledge concerning
feel? We do not even have concrete data from descriptive clinical medicine. In fact, will they be able to realize that by
research. What we do have, however, is the fact that we love agreeing to treatment, they are placing their son on the
our son and would sacrifice anything in order to save him. We “experimental stone.” This decision is extremely complicated. As
can see here that in times of desperation, we become stated supra, in light of D’s parents both emotionally and
“drowners” in a sea of hope. Well aware that their son will soon psychologically being desperate, they see this EMT as an
pass away, the parents of D are desperate in finding a means of indisputable treatment and as the last resort to saving their
saving him. child. This inevitably points to a high possibility of therapeutic
Here, we need to ask whether or not persons, under misconception.
the circumstances similar to our discussion at hand, are capable The experimental use of high dosages of immune
of making a composed and reasonable decision. In the case of suppressors may be comparable to an emergent life saving
D’s parents, their consenting to the recommended EMT is most surgery with a high probability of death. For instance, suppose a
likely a paternal instinctual response and not a product of patient is brought to the emergency room from a lethal car
reasonable thought. accident where her organs have been severally damaged. If
Next, we need to consider the following question: if a nothing is done, the patient will die. If we open her up and
composed reasonable decision cannot be made, should attempt to stabilize her, we may save her; however, the risk of
consent be acquired from a suitable proxy and not from the death during operation is also extremely high. What would the
parents? D’s parents have experienced the many bitter stages parents do under these circumstances? This decision involves a
of D’s illness with him; they see their child as first priority and psychology of “we have to do something…,” a natural reaction
they will, ultimately, have to bear the death of D more than to wanting to save one’s child.
anyone else. In rare cases, however, parents are not always To a certain extent, this example resembles our case of
suitable to represent the welfare of the child. For instance, when discussion. However, because our case is dealing not with a
a parent is incapable of feeling the same kind of compassion proven and accepted treatment, there is a great tendency to fall
and love towards their child. into therapeutic misconception. We are dealing with the
In the case of D, his parents would sacrifice anything, experimental use of high dosages of immune suppressors on
including their own lives. Even though they may be approaching patient D and there is no supporting evidence for it being an
things from an emotional standpoint and not one reason, this is effective or it being a beneficial treatment. On the one hand, the
natural. Accordingly, this cannot be seen as sufficient grounds emergent surgery has a high risk but a proven effectiveness; on
for the use of a proxy. the other hand, we know neither the degree of risk nor the value
D’s parents are most suitable to represent D not because of our EMT.
they are capable of making a rational decision based on reason,
but rather because they have an unconditional love for D as his The parent’s state of mind and its significance
parents. On the other hand, however, this is the precise reason In our case, the circumstances are decisive. We can
for their increased vulnerability to both good and evil measures overlook the fact that the imminent death in our case has a
of hope. Although they very well may be unaware of their great impact on the person who has to decide. If D were in a
vulnerability, their intention and will to save D is as strong as stable condition and his death were not pressing, would D’s
rock. In short, the fact they are willing to do anything in order to parents really agree with the experimental use of high dosages
save D invites an abyss of vulnerability and an abundance of of immune suppressors? For instance, if D’s condition was not
desperate hope. as pressing as in our case and if D still had an estimated six
months to live, would D’s parents agree to an experiment with a
Commission versus omission 15% mortality rate? The problem we need to consider is
In the following section, we discuss the issue of whether or not it is appropriate to propose this EMT to D’s
commission versus omission. In our case of discussion, D is parents when D is on his deathbed. If this treatment were not
critical and there is nothing else medicine can do. We can only proposed to D’s parents, they would not hope its success; they
wait. Our last resort is using high dosages of immune would not need to struggle with the decisions of doing this or
suppressors. However, while this EMT could save him, it could doing that.
also turn out to kill him. Nobody knows to which will result. If our psychological analysis in not mistaken, once the
We are faced with the decision of whether we choose to slight possibility of saving D is suggested by his physician to D’s
attempt to treat him with an EMT or let him pass away in peace. parents, his parents will cling onto the hope of saving him until
Certainly enough, we neither are causing him to suffer nor are the end. Accordingly, the imperative problem is of whether or
we hastening his death. But then again, we are dealing with a not it is suitable to recommend this kind of EMT to desperate
double bladed sword; that is, while we could be saving him with parents, and whether or not it is appropriate for physicians and
this EMT, we could also be killing him. In short, we are
Eubios Journal of Asian and International Bioethics 14 (March 2004) 55

medical researchers to throw a lost hope to a person in should sit down and discuss the various options. The disclosure
desperation. of information concerning this type of EMT does not provide D’s
parents more options, but rather, even if it is seen as a last
4. Arguments For Disclosing Information Concerning EMT resort, it could provide D’s parents a means to continue to
Up until now, we have described the decisive importance believe.
of recommending an EMT to D’s parents and the associative The use of EMT in our case of discussion may need not to
psychological replications. In the following section, we review be approved by an IRB. We are not dealing with standard
the possible benefits of using an EMT on a critical patient. clinical research. We are dealing with a preliminary innovative
These arguments for the use of EMT pertain to the patient’s therapy that could save D from dying. Accordingly, if the team of
imminent death, the patient’s right to know, the disclosure and physicians and D’s parents both consent to it’s use, EMT could
right to access to information, and lastly, the fact that the be suitable in treating D.
purpose of medical therapy is to save lives.
Argument #3: The objective of medical therapy
Argument #1: The patient’s imminent death. The most vital objective of medicine is to save the dying
Comparing the benefits and risks in the case of EMT is patient. In our case of discussion, “omission,” defined here as
meaningless if set on premise that “if we do nothing, the patient the continuing of conventional therapy, would inevitably lead to
will unmistakably die,” the fact is that even with the best D dying. Experimental intervention, however, provides two
standardize therapy, D can not be saved. By prescribing D paths: one of living and one of dying. As a medical professional,
immunosupressors, there lies the possibility of bringing about one has the duty to propose all the options that have even a
his death sooner; however, we could not consider this risk slight hope of saving the patient; there also exists the issue that
without holding it contrast to the null probability of saving D with unless D is treated with the EMT, other pediatric patients under
the best standardized therapy. Without question, we would not similar circumstances cannot benefit from possible future use of
recommend this experimental treatment with a mortality rate of the therapy. If the treatment is effective with D, it could be used
100% and a survival rate of 0%. as the starting point for further evidence. A random control trial
However, with a success rate of 15% and a mortality rate could then prove this EMT to be clinically effective against
of 15%, one could justify proposing this EMT. As mentioned disease A and safe.
infra, omission of EMT would result in the patient dying for no
standard therapy is effective. In the case of a chronic illness 5. Arguments For The Nondisclosure Of Information
where there is no risk of dying, a 15% success rate and a 15% Regarding EMT
mortality rate would not be sufficient in justifying the use of this Several arguments suggest that, when conventional
type of EMT. Nevertheless, the patient presently lying on his treatment is ineffective, it may be permissible to propose an
deathbed and the ever-pressing need to do something has a EMT as an option to the patient’s family on the condition that
great impact on the situation. there exists a slight possibility of saving the child and that the
What are we to do with a 15% success rate and to an EMT would neither harm nor lower the patient’s QOL. However,
85% mortality rate? On the premise that “if we were to do there exists a few highly justified arguments against this
nothing, he will inevitably die,” any possibility of saving the child standpoint. In the following section, we discuss those reasons
could be considered as a high probability. Physicians would against disclosing information regarding an EMT to the family of
certainly recommend a treatment with a 50% success rate and a dying pediatric patient.
10% mortality rate in the case where omission of medical
treatment lead to an imminent death. The respect for D as an independent individual
It is possible to consider the lowering of a patient’s The argument that one should respect D’s human dignity
quality of life (QOL) subsequent to EMT. In the case of D, is valid. Despite he being only 5 years of age and
however, the lowering of QOL is irrelevant for he is neither unconsciousness, D’s dignity must be observed. He has the
conscious nor in a state of pain. Accordingly, there is no evident right to be protected from being treated inhumanely. Although
reason for not recommending this EMT to D’s parents. A 15% the possibility of D’s parents voluntarily consenting to the EMT
chance of saving D from dying is seen as relatively hopeful. Yet is quite low, it can be considered unethical to conduct clinical
on the other hand, the low rate of success and apparent research without final consent from the subject.
uncertainty indicate that this therapy is no lifeline. Thus, the In the case where D could realize his physiological
proposed experimental therapy is seen to lie somewhere in- condition and make a decision, he may accept to undergo
between being hopeless and acting as a lifeline. treatment knowing that this was, although uncertain, the only
possibility of being saved. He is to decide whether to undergo or
Argument #2: The right to access to information. to refuse treatment based on it being a harmful approach. It is
If D and D’s parents are looking for anything with even the patient’s right to choose and to feel comfortable with his
slight efficacy, they have the right to know about an EMT and reasonable decision.
the right to undergo treatment. The covering up options by the The patient also has the right to know and the right to
medical staff in the name of nonmaleficence is nothing more disclosure. D, however, is five years old and, moreover,
than paternalism. Trying to protect D from EMT in the name of unconscious; he is neither capable of communicating nor of
nonmaleficence will only lead to his death. One could say, making a decision. Proxies, representing a patient with a loss of
rather, that the EMT is an attempt to save D from dying. decision-making capacity, are allowed to make decisions
Accordingly, when acquiring informed consent, it is permissible regarding conventional therapies. In the case of clinical
to provide the parents information regarding EMT. research, however, the use of a proxy is recognized only when
In today’s age of the Internet, there is a high possibility the experimental therapy has a high probability of directly
that D’s parents could look up information regarding the benefiting the patient.
experimental use of high dosages of immunosupressors and,
subsequently, request “innovative therapy.” In the case where Double Uncertainty
D’s parents request treatment, despite realizing that 15% In the following section, we examine the aspect of double
success rate is based on data collected with a small number of uncertainty inherent to cases where the EMT has only a certain
adult patients and that D’s dying is ever-impending, the probability of saving the patient’s life. There is a vital difference
physician should sit down and talk with D’s parents about the in quality between conventional therapy and this type of EMT.
specifics of using this EMT. Regardless of whether or not the The probabilities of success versus risk of a conventional
therapy is experimental, or whether or not the probability of therapy are statistically known. For instance, let us suppose that
actually saving D is outlandish, D’s parents and physicians a treatment X is effective on 70 patients out of 100. Here,
56 Eubios Journal of Asian and International Bioethics 14 (March 2004)

uncertainty rests on whether a patient falls in the remaining 30 “using” them. It would be difficult for D’s parents to refuse EMT
or the successful 70. With the use of an EMT, however, the based on: 1) the recommended therapy is D’s last and only
supposed 15% efficacy is itself uncertain. In order to prove the hope, 2) it is would be quite difficult to refuse the suggested
rate of efficacy, a clinical trial needs to be conducted. EMT in the context of having relied upon Dr. I throughout D’s
Additionally, even if this 15% were proven, whether or not D treatment, 3) the relationship of fidelity between physician and
would fall into this 15% is again uncertain. Our case exemplifies family would fall into strain subsequent to refusing the
this kind of double uncertainty. suggested therapy, and 4) compared to other circumstances,
Even if the success rate of using high dosages of D’s parents are very likely to be therapeutically misconceived.
immunosuppressors on adult patients with disease A was 50% Secondly, this type of EMT should not be carried out
or 100% instead of only 15%, one could still find validity in the under conditions where a patient is on the verge of death. One
argument against recommending this treatment to D’s parents should recruit patients with the same disease yet not in a critical
based on the principle of double certainty. The mere probability state. Unlike research concerning cardiac pulmonary
of 50% or 100% is all too uncertain when it comes to saving a resuscitation, this type of EMT does not require subjects to be in
patient from dying. Conducting EMT in the name of saving a life, critical condition. Accordingly, one should not conduct this type
accordingly, is impermissible in times of emergence. of EMT under critical circumstances.
There exists an increased level of uncertainty inherent to Thirdly, regardless of how much Dr. I wishes to save
the nature of EMT. For instance, the data concerning side patient D, the fact is that he has invested interests in conducting
effects of the EMT on adult patients is inapplicable. The level of the first trial internationally on pediatric patients with disease A.
uncertainty ascribed to possibly harming subjects is significantly Accordingly, when Dr. I explains the EMT to D’s parents,
high. One can only deny those side effects that have been seen consciously or subconsciously, he may phrase it in an all too
in previous studies on adult subjects. It is possible that D may convincing way. The mere fact that the medical staff may hold
suffer and experience pain unforeseen by I or D’s parents. the subconscious desire to carry out this research points to a
While a patient’s needs increase while being in critical condition, significant frame effect. We need not only to consider the
the same often is true regarding risk. Despite D’s needs psychological state of the patient’s parents, but also of the
increasing, the expected benefits of EMT do not necessarily medical staff.
increase. Fourthly, according to the principle of justice, the IRB
should not review Dr. I’s protocol with priority over others. In the
Cruelty case of the IRB reviewing this case as urgent indicates an unfair
Providing false hope to persons having to face and slowly prioritizing based on the rule of rescue. The average two
accept the tragic fate of soon loosing their child is far from being months common for the IRB to review a case is a result of the
an act of beneficence. Even if that hope is founded on concrete numerous research protocols that are proposed. Even in the
data, there is merely a 15% chance of success. Although the case where the circumstances are not urgent, there are
patient may die with an omission of therapy, EMT carries a hundreds of patients dying of an incurable disease. It is unjust to
mortality rate of 85%. Giving hope to parents who will later have prioritize D’s research due to our incidentally knowing D’s
to face, once again, the unbearable fact that their son will soon situation personally and not knowing the many other hundreds
die can be considered to be cruel. dying. For instance, suppose that the approval of another
As explained infra, proposing the experimental use of high proposal is postponed a week due to the prioritizing of D’s
doses of immunosupressors revokes any other options. That is, experimental treatment. The subjects who may have
there is always the option of allowing D’s parents to resign their participated in the postponed clinical research may pass away
hopes of saving their son. They would then be able to spend his within that week subsequent to not being able to undergo
remaining days quietly by his bedside. The irresponsible act of therapy. The limited time of the IRB needs to be justly
throwing a lost hope to D’s parents consequently rids them of proportioned and not determined by a proposal’s degree of
the limited and precious time left with their child; it is far from urgency or necessity. One needs to take into consideration the
being a beneficiary act. effect of the research, the order of proposal and the waiting
Treatment has the objective of benefiting the patient. time. We need to treat equally those patients dying who lay not
Conventional therapy with a success rate of over 50% benefits before us with those patients dying before our eyes.
the patient. A treatment with a 15% success rate and a 15%
mortality rate can also be considered beneficial. However, in the Slippery slope effect
case where the probabilities of harm versus effectiveness are There is a slippery slope effect inherent to our case of
not yet substantiated as evident, the decision of whether or not discussion. If D’s experimental therapy were prioritized as an
such a therapy is beneficial is impossible. To even slightly urgent review and approved, there would exist the concern of a
suggest the possibility of saving a dying child’s life without slippery slope effect on the process of reviewing research. A
providing any substantial means of making a decision regarding priority-based review conducted with D’s case may lead to a
the treatment itself is, needless to say, cruel. similar process regarding other critically ill patients, other
patients under urgent circumstances, and other families with a
Therapeutic misconception held by the medical staff dying child. This prioritizing of urgency, likewise, may lead to
Therapeutic misconception is considered to be one of the proposals becoming increasingly risky with lower probabilities of
factors behind proposing and accepting EMT. While the parents success and greater side effects. Additionally, the number of
of D inevitably are influenced by this therapeutic misconception, urgent proposals from ambitious researchers would, more than
what about Dr. I in this case? The possibility of Dr. I having likely, proliferate. Concurrent to this slippery slope would be the
become emotionally involved with patient D’s circumstances is increased number of non-urgent proposed being overlooked or
high. In this sense, Dr. I is just as vulnerable to therapeutic postponed. Moreover, critical patients like D would more and
misconception as D’s parents. EMT is conducted not on the more become subjects of clinical research. Here, we need to
premise of expecting effectiveness, but rather, in order to prove consider whether or not Dr. I’s behavior can be universalized,
a therapy’s effectiveness. To justify the use of an EMT as a that is, would it remain ethical on a universal level.
reason to save a life is nothing more than therapeutic
misconception. The limits of information disclosure
A patient’s right to access to information concerning
Justice treatment should be respected. In the case of EMT, one has the
In our case of discussion, the issue of justice is pressing. right to access to information concerning the protocols reviewed
Firstly, asking D and D’s parents, in all their vulnerability, to by the IRB and used to recruit subjects. The medical staff,
participate in research that one is conducting could be seen as however, should have the right of discretion regarding EMT.
Eubios Journal of Asian and International Bioethics 14 (March 2004) 57

Even if the subject him or herself expresses the desire to I always learn a great deal from Asai and Itai’s case
undergo a certain EMT, there is no ethical obligation to go studies. They are based on their personal, hands-on experience
against one’s conscience by carrying out this EMT. In the case with patients. In reading, one feels their personal concern. I
where the physician feels an obligation to disclose information have to admit, however, that with respect to this particular case I
concerning the EMT, does he or she have this same obligation cannot agree with them. Please forgive my simplistic approach,
to those subjects recruited from other countries with a similar but I think the matter is summed up in their statement that while:
critical condition? What about research that is not published? It “…we are incapable of calculating which will be best for him.
would be impossible to disclose all information regarding the Omission will inevitably result in letting him pass away.” If the
research protocol to subjects in studies conducted inevitable result of omission is death, then why not try
internationally. something even if the presumed success rate is only 15%? Asai
and Itai talk about the cruelty of giving the parents “false hope”.
6. Conclusıon This is a serious matter. But why need the proposal of an EMT
This paper has discussed whether or not it is permissible be phrased in such a way as to give false hope? The physicians
to recommend an EMT under urgent circumstances to the have to find a way to explain to the parents that they would like
parents of a dying pediatric patient. The imperative problem is to try this therapy as a last resort, while aware that the chances
deciding whether or not it is appropriate to recommend EMT to of success are almost non-existent.
desperate parents and whether or not it is suitable for Asai and Itai discuss at length the complications of the
physicians and medical researchers to throw a lost hope to approach to the institutional review board (IRB). But I doubt that
people in desperation. On the one hand, we have examined ethics require turning to an IRB in such a case. The World
arguments of it being permissible based on the fact that the Medical Association Declaration of Helsinki
patient faces an imminent death, that the patient’s parents have [http://www.wma.net/e/policy/b3.htm] is God’s Revealed Word
the right to choose and the right to access to information, and about ethics. It can certainly be wrong. But their guidelines for
lastly, that the objective of medicine is to try to save patients’ medical experimentation on human subjects are extremely
lives. On the other hand, we have found it impermissible based useful and often show a good deal of wisdom. Paragraph 32 of
on the following arguments: it can be seen as undignified the most recent version says:
treatment of D, the factor of double uncertainty, the cruelty of "In the treatment of a patient, where proven prophylactic,
proposing an EMT as a last resort, therapeutic misconception of diagnostic and therapeutic methods do not exist or have been
the medical staff, subconscious motives held by researchers ineffective, the physician, with informed consent from the
including self-benefit, various issues pertaining to research patient, must be free to use unproven or new prophylactic,
justice, collapse of the review process subsequent to the diagnostic and therapeutic measures, if in the physician's
slippery slope effect, limitations of information disclosure, the judgement it offers hope of saving life, re-establishing health or
disparity between patient’s decision and his proxy’s decision, alleviating suffering. Where possible, these measures should be
and lastly, the unknowable likelihood of side effects. We see made the object of research, designed to evaluate their safety
that one cannot justify an overlooking of these factors based on and efficacy. In all cases, new information should be recorded
an intention of wanting to the save the life of a dying child. The and, where appropriate, published. The other relevant
members of the IRB and the medical staff involved need to guidelines of this Declaration should be followed. "
remain objective even when feeling compassion towards the I think that whoever wrote this guideline showed a great
patient. The position of justifying the use of an EMT based on deal of wisdom in recognizing that when the alternative is
the principle of wanting to save a dying patient could be certain failure, ethical restrictions should be liberalized.
understood emotionally; nonetheless, members of the IRB need
to reconfirm their decision beyond the multiple number of
possible misapprehensions.
The role of an IRB is to act as a brake regarding the self-
interest of medical researchers, the use of therapeutic
misconception by medical staff, and the probability of risks over
benefits. Dr. I requested his proposal be reviewed urgently in
order to save D’s life. The subject of Dr. I’s proposed EMT is a
dying patient being treated under Dr. I. Even the members of
the IRB could fall into therapeutic misconception emotionally.
However, what is needed is for the IRB to make a decision from
an objective standpoint. For the medical staff and proxies, final
decisions regarding treatment of dying patients are ever
pressing. While “doing nothing” is heart rendering, the right thing
to do is not a matter of what to do, but rather of making the best
decision.

Experimental Medical
Treatment for a Terminal
Pediatric Patient:
Commentary on Asai and Itai
- Frank J. Leavitt, Ph.D.
Chairman, The Centre for International Bioethics
Faculty of Health Sciences, Ben Gurion University of the Negev,
Beer Sheva, Israel
Email: yeruham@bgumail.bgu.ac.il
58 Eubios Journal of Asian and International Bioethics 14 (March 2004)

date of 1930. The laws about some insurances such as Disease


The Development of Health Insurance, Death Insurance, Old Age Insurance etc. were
passed between 1930 and 1960. The Law of the Control of
Insurance in Turkey and its Insurance Companies had come into force in 1959 (5).
The Turkish Insurance System developed with some laws
Importance from the Point of such as the Retired Cooperation (1950), The Law of the Control
of the Insurance Companies (1959), The Law of the Social
View of Medical Ethics Insurances (1965) and so, the health of people was insured.
Moreover, the Law of the Socialization of Health Services had
- Ibrahim Basagaoglu, Ph.D. come into force in 1961. This law provides that health services
Department of Medical Ethics, Faculty of Medicine, Istanbul reach to everybody. According to another law with the date of
University, Istanbul./TURKEY 1992, poor patients who provide a green card from the official
Email:ibasagaoglu@tnn.net foundations are treated without fee. The persons who haven’t
- Aysegul Demirhan Erdemir, M.D., Ph.D. any guarantee from the point of view of the social security, and
Department of Medical Ethics, Faculty of Medicine, Uludag can not provide the expenses of health services can get a green
University, Bursa/TURKEY card. These persons shouldn’t give a false knowledge about
Email: ademirer@yahoo.com their economic conditions. Moreover, the persons who want to
obtain a green card should know their legal applications. If they
Abstract change their dwellings, they should inform about their new
Health Insurance shows some periods in Turkey. After the addresses. The health Ministry should pay their expenses (6).
foundation of the Turkish Republic, health insurance developed We can see some ethical problems between patient,
and had modern characteristics. Some problems are present in insurance company and hospital. Some difficulties may exist in
the relations between patient and physician in the health the patients’ therapies because of these problems. Because the
insurance today. In the period of Ottoman Empire, both religious social insurance hospitals are very crowded in Turkey, the
social foundations and professional guilds helped poor patients. physicians cannot have the time for the therapies of the
Some foreign insurance companies opened some bureaus in patients. Sometimes physicians cannot behave emphatically
Turkey after 1850. The Law of Ottoman Insurance Company because of their economic, social and professional problems.
had come into force in 1892 (1). Afterwards, modern insurance Patients’ number is very much and the physicians should treat
laws were seen in the period of Turkish Republic. about 100-200 patients in a day. Some persons work in some
Today, two kinds of health insurances are present in foundations without insurance because their foundations don’t
Turkey. One of them is the health insurance belonging to the want to pay their premiums. So, they cannot be treated when
Official Foundations. Another kind is the special health they are ill. As a result, their health hasn’t social security.
insurance (2). The persons who sign insurance policy with Moreover, they cannot apply for the special insurance company
insurance companies should know some points. These are very because they are not rich. Moreover, today, many special
important from the point of view of the ethical principles and the insurance companies are present in Turkey. The Insurance
relations of patient-physician. In this paper, these subjects are Premium of the Patient should be in the equal ratio to his(her)
stressed and some results are obtained. treatments’ expenses. If the expenses are more than the
insurance premium, the payments belonging to the therapies of
In the Ottoman period, both religious social foundations the patients cannot be made and this condition is against the
and professional guilds helped to the poor patients. The needs beneficence principle of the medical ethics. Today, the number
of the poor patients were provided in some foundations such as of specially insured persons increase in Turkey. But, the person
guesthouses and hospitals (3). Hospitals were called who signs the insurance policy with the insurance companies
"darüsshifa" (healing house in English) (4). Poor patients were should know some points. These are very important from the
treated in the hospitals. These were "wakf" (charitable point of view of the ethical principles and the relations of the
foundations). These were present in a complex city. But, poor patient-physician. The names of the diseases of the persons
patients didn’t have official social security. Modern social and their therapies’ ways should be written on the insurance
insurance began to develop in Turkey in the nineteenth century. policy (7). The physician should write a true report about the
The religious beliefs were contrary to the concept of modern diagnosis of the insured person’s disease. Moreover, two rules
insurance. According to The Agreement About Branches of are very important (8) :
Foreign Anonym Insurance Companies with the date of 1889, all 1) The disease of the patient who makes an agreement
the companies should get permission. So, many insurance with insurance company should be in the list of the diseases of
companies began to get permission. The Agreement of Ottoman this insurance company (8).
Insurance Company had come into force in 1892 and an 2) If the insured person has a different disease, it should
Ottoman Insurance Company was founded. In this agreement, be determined with a report and this disease should be added
we see some articles about the management and aims of the to the company’s disease list. Generally, rich persons apply for
insurance company. Some banks founded the General Ottoman the special insurance companies (9).
Insurance Company. Turkish National Insurance Company was
also founded in 1916. We see many Turkish Insurance Conclusion
Companies and some social security foundation-ship up to As a result, health insurance has ethical problems in
1923. Some of them are Military Retired Cooperation, Civilian Turkey. These can be seen both in the fields of special
Personnel Retired Cooperation. These supported the social life insurance and state insurance. Ethical dilemmas can be seen
of the personnel. Dilaver Pasha Agreement with the date of in the relations of patient-physician and in the foundations of
1865 has some articles about the therapies and the health insurance (10). All of these problems have been stressed
compensations of miners. in this paper. Moreover, the importance of some laws about the
In the Period of Turkish Republic, some modern laws health insurance has been pointed out in Turkey.
were seen in the field of health insurance. The Law of the Trade
with the date of 1926 regulated the relations between the References
insured person and insurance company and has some articles 1) Ersan G.. Türkiye’de Sosyal Güvenlik(Social Security in Turkey).
belonging to the control of insurance. The Law of Control of Istanbul:Türk Dünyası Araytırmaları Vakfı;1987.p.34-78.
Insurance Companies contains articles about the rights of the 2) Alper Y. Türkiye’de Sosyal Güvenlik ve Sosyal Sigortalar (Social
Security in Turkey and Social Insurances). Istanbul: Alfa Yayınları;
insured persons. Some articles about the aids of health to the
1999.p.1-230.
workers are present in the Law of Protection of Health with the
Eubios Journal of Asian and International Bioethics 14 (March 2004) 59
3) Demirhan EA. Sosyal Sigortalar Kurumunun Türk Tıp Tarihindeki Yeri The term “race” has several concepts in biology. In
ve Sosyal Sigortalar Kurumu(Social Insurances in the Turkish agreement to Mayr (2), race is a sympatric population, not
Medical History) Bursa Bölge Hastanesi. Dirim Dergisi 1997; 73 interrelating, that differs in its biologic characteristics, but is
:306-14.
does not differ in morphologic characteristics. Futuyma (3)
4)Yıldırım N. The History of the Foundation of Poor Persons in Istanbul.
Istanbul Darülaceze Müessesesi Tarihi. Istanbul: Numune states that race is a vague and meaningless term, for a set of
Matbaacılık; 1996.p.23-230. populations occupying a particular region that differ in one or
5) Aydınlar AU. Sosyal Sigortalar Kanunu (Law of Social Insurances). more characteristics from populations elsewhere, frequently
Istanbul:Nobel Tıp Kitabevleri ; 1976.p.55-7. equivalent to subspecies. Race is also defined as a
6) Elcioglu O,Unluoglu I,Demirhan EA. Green card and ethical circumscribed population with accentuated genetic
problems. J Medical Ethics Law and History 2003 ; 11 :8-11. differentiation.
7) Demirhan EA. Lectures on Medical History and Medical Ethics. Nobel Historically, the division of the human beings in races was
Tıp Kitabevleri; Istanbul: 1995.p.78-123.
used not only to classify and try to better comprehend the
8) Tomes JP. The Health insurance portability and accountability act of
1996, understanding the untikicback laws. J Health Care Finance different populations, but most of all to justify the exploration
1998; 25:55-62. and oppression of people considered “biologically inferior”. For
9) Campbell A,Gillett G,Jones,G. Medical Ethics. Oxford University example, the Amerindians were considered not civilized during
Press; New York :2002. all the American colonization (4). For at least 50 years, between
10) Horstman K. Technology and the management of trust in insurance 1850 and 1900, the American census contributed directly to the
medicine.Theoretical Medicine and Bioethics 2000 ; I :39-61. generation of scientific ideas of race that were the base of the
racial speech that justified and supported the slavery and
segregation (5).
Although the race concept can, in some few cases, be
Biological Views of the used to reveal inequities between human groups, the utilization
of this concept in medical sciences can contribute to ideas of
Inexistence of Human Races biologic determinism (6) and complicate diseases diagnosis (7).
1 2
Moreover, stereotypes associated to certain ethical groups can
- Silviene F. Oliveira & Luzitano B. Ferreira produce distinct behavior among health professionals, resulting
1
Department of Genetics and Morphology, University of Brasília, in less access to health services (8), diagnosis exams of high
Brazil. technology (9) and treatment (10).
2
Post Graduation Program, University of São Paulo, Brazil. Because of its concept, there is a belief that the distinction
lbferr@rge.fmrp.usp.br of human being has a solid base in biologic evidences.
Nevertheless, there are several problems for the utilization of
Abstract this concept by the biologic point of view. Because of this, the
In biology, race can be defined as a geographically purpose of the present investigation was to verify the difficulties
bounded population showing accentuated genetic of the utilization of the race concept for human populations.
differentiation. It is believed that the division of human species The first problem in the conception of human races, in
into “races” presents solid biological base. However, there are agreement with Futuyma (11), is the need of having populations
problems over using this term. The present work aims to point circumscribed geographically. The human specie migrates by
out some of the difficulties of using the concept of races for the nature and expanded through all the continents since its origin.
human species, using a biological approach. The race concept A brief partial isolation permitted the beginning of the
is typological, imprecise, based on subjective concepts, and can differentiation of the species. Nevertheless, mainly after the
suffer different interpretations according to the criteria used, beginning of the Great European Navigations, any type of
who is using it, and even the time and place of the isolation was capable to be broken. With the innovation and
determination. The chosen characteristics for the conception of increase of the transports this possibility reached unimaginable
races are usually in accordance to the convenience of the user, levels in few decades ago. Besides, trying to apply only
based on external and extremely complex morphologic criteria, geographic criteria for the designation of human races is not
with little support of genetic knowledge. This concept is also adequate because, as stated Cartmill (12), if “black”, “white”,
static, and does not represent the modifications and evolution of “asiatic” and amerindians individuals that are born in the same
human populations, with the same evolutionary origin. Most place are different by the racial point of view, so the races are
populations are not circumscribed, so that there is genetic flux not distinct geographically. On the other hand, if these
among them, leading to genetic differences not big enough to individuals constitute a race, the races are not distinct
support the sub-division of the human species into races. The phenotypically.
genetic differences among human groups are smaller then The definition of race is imprecise, extremely broad and
between individuals of the same population. From this biological submitted to several interpretations in agreement to the criteria
point of view, the existing inconsistency for the classification of to be utilized. There is not a specific criteria that can guarantee
the human species in different races, make the morphological to populations the designation of race, which is taking lots of
criteria used nowadays nonsense. systems to propose the abandon of the term (13). Applied to the
human beings, this term corresponds to an arbitrary system of
Introduction visual classification that does not demarcate distinct populations
The human being feels the need of classifying everything (14).
around us. Even though the first classifications of the species Race is a characteristic of convenience, which is used
are from immemorial times, it is known that the philosophers when there is the need to distinguish populations, which makes
separated the beings in aerial, terrestrial and aquatic domains different criteria to be used by different classifying agents.
or whether they are useful or hazardous to humans. In the Several characteristics and genetic polymorphisms show
biological classification proposed by Linneaus, still used today, different geographic patterns with the possibility of several
the species are separated in categories, going from the most combinations to distinguish one population from another (15).
broad (rein) until the most specific (species). The subdivision of The recent number of human races identified can vary from 3 to
different populations of a species is denominated subspecies, 200 (16).
correct designation of what we call “race”. This concept was first The classification of human beings depends on who and
introduced to human populations by the French biologist Buffon, where the evaluation is made. Anthropologists that lecture in
as an arbitrary classification that was used simply like a label institutions that are not from the elite and that had a social origin
and not like a scientific entity (1). less privileged tend to be more receptive to the position of non
existence of races than their colleagues from elite institutions
60 Eubios Journal of Asian and International Bioethics 14 (March 2004)

(17). In England, “Asiatics” correspond to people that come from differentiated in this Scala Naturae. This static concept is not
India, Pakistan and Bangladesh, whereas in the United States, it consistent with the continuous process of biological evolution.
describes people from Pacific Islands, China and Japan (18). A The biological human variation, as well as of the other species
person with European ancestry born in Mexico could be is continuous, complex and changeable.
classified as “white” in all the countries of Latin America, Comparing the human populations with other species, it is
whereas in the United States would probably receive the observed that the human specie is the one that presents one of
classification of “latino” or “hispanic”. the smallest values of genetic diversity. This fact is a direct
The definition of some races can change with the time. In consequence of the high rate of dispersion, migration, as well as
the Unites States, in the beginning of immigration, Irish and the short time of evolutive history of our specie. Comparing the
Italians were considered “not-white” being afterwards classified human being with species of mammals with power of
as “caucasians” (19). Mexicans were considered “white” in dispersion, we see that the human differences are not high,
decades of 1940 and 1950 (20), being nowadays designated as even with the great distribution of the human population. The
“hispanics”. human beings show a modest level of genetic differentiation and
Classification is not elucidative and can obscure the this level of differentiation is below from what is conventionally
human diversity. Frequently there are utilized broad and vague written of what separate races (33).
terms for the definition of races, which can include several Only recently we can test the existence of races in more
populational groups by the point of view of origin, culture and precise biological terms, with the advance of genetics and
ancestrallity under the same designation. The American census molecular biology. Data show that the differences between
of 1990 set ten subcategories for Asiatics and natives from the human populations are not enough to classify them as races.
Pacific Islands, but none for “whites”, which answered for 80% The results of extensive genetic studies of several human
of the population (21). The term “asiatic” utilized in the United populations from different continents show the fragility of the
States can underestimate several populational groups, making concept of race, because it was verified that the human diversity
the great part of the world population o be seen as one (22). was higher inside the “racial” or geographic groups than among
Frequently the criteria utilized for the racial classification is them. Lewontin, analyzing populations from distinct continents,
not adequate. Generally there are used extern morphologic concluded that 85% of the human genetic diversity occurred
characteristics not very representative genetically. In one study inside the populations or races (34). In 1980, studying the
with a “white” brazilian population, it was verified the populations of Europe, Africa, Middle Orient, Asia, America and
contribution of 28% of afro-descendents and 28% of amerindian Oceania, Latter (35) verified that the diversity inside the
in the total pool of mitochondrial DNA, which is inherited from populations was nearly 84%, among populations of one group
the mother (23). In one study of a “black” population of 6% and only 10% among the geographic groups. Others studies
Pittsburgh, in the United States, it was verified the presence of with several populations and different markers had the same
25% of genes considered as “caucasians” (24). In other conclusion (36,37).
American cities, the mixture of “European genes” in afro- No one can deny that Homo sapiens is a specie markedly
descendents ranged from 11.6% to 22.5% (25). In one afro- differentiated; few argue the observation that the differences in
descendent brazilian population, considered “black”, in the the color of the skin is the most obvious sign of this variability.
Amazonic region, morphologic parameters verified the presence But the variability does not request the designation of race, in
of 14% of mixture individuals, whereas in the study of 12 genetic the case of our specie, it does not occur in levels that allow this
markers of blood groups the mixture reached 24% (26). In the designation. This point of view does not imply that there is not a
same population, studies with markers of chromosome Y, of variation among populations that compose our species, but this
paternal origin, verified the presence of 43% of mixture and with variety is not characterized as race (38).
mitochondrial DNA, of maternal origin, a mixture of 47% (27). Race is a social and not a biological concept, with serious
The color of the skin, as well as the color and the shape of ethical implications. As mentioned by Varma (39), the history of
the hair and eyes, used in the races classification, are polygenic Eugenia presents scientific questions related to race and
and multifactorial characteristics not yet understood by the ethnicity, despite the benevolent intentions, can take to the
biologic point of view (28). It is a characteristic of continuous legitimacy of discriminatory stereotypes.
variation that does not allow the categorization in classes. The The classification of human beings in different races is not
levels of just one pigment known as melanin are responsible for based upon biological differences, is imprecise, convenient for
the production of several shades in the humanity. The those that do the classification, generally does not auxiliate a
environment and age are factors extremely important in the better comprehension of human groups, does not inform with
definition of the color of a person which turns very difficult to precision our evolutionary history and is not based in genetic
associate a certain phenotype to a genotype (29). The differences among human population. This division, arbitrary
interaction with the environment is individual, that is, depends and artificial, emphasizes the small differences among
on the history of life of each person, despite being similar to populations with their stereotypes and prejudices, and not
individuals inhabiting the same geographic region. supplying a better comprehension of the human being.
Race is a typological concept and is based upon ideal,
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27- Ribeiro-dos-Santos, A. K., Pereira, J. M., Lobato, M. R., Carvalho, Scaria [5] studied websites offering sale of Viagra and
B. M., Guerreiro, J. F., Batista-dos-Santos, S. E. 2002. Disimilarities analysed the information regarding contraindications provided to
in the process of formation of Curiaú, a semi-isolated Afro-Brazilian
potential consumers and found that though most of the websites
population of the Amazon Region. Am J Hum Biol, 14:440-447
28- Sturm, R. A., Teasdale, R. D., Box, N. F. 2001. Human provided information on contraindications, majority was
pigmentation genes: identification, structure and consequences of incomplete
polymorphic variation. Gene, 277:49-62
29- Sturm, R. A., Box, N. F., Ramsay, M. 1998. Sturm et al. Human Ethical Concerns
pigmentation genetics: the difference is only skin deep. Bioessays, Information and the right to reliable Information
20:712-720. Consumers have the right to reliable and trustworthy
30- Goodman, A. H. 2000. Why genes don’t count (for racial differences information about something he is going to buy. Studies [5]
in health). Am J Public Health, 90:1699-1702
show that most of such information is incomplete. Often the
31- Jones, J. S. 1981. How different are human races ? Nature,
293:188-190 Information is fraudulent or inconclusive [see Fig1]. Inconclusive
32- Futuyma, D. J. op. cit. note 4 or fraudulent information bound in a cloak of professional design
33- Templeton, A. R. op. cit. note 15 and presentation is an important concern.
34- Lewontin, R. C. 1972. The apportionment of human diversity. Evol
Biol, 6:381-398
35- Latter, B. D. H., 1980. Genetic differences within and between
populations of the major human subgroups. Am Nat, 116:220-237
36- Deka, R., Shriver, M. D., Yu, L. M., Ferrel, R. E. & Chakraborty, R.
1995. Intra- and inter-population diversity at short tandem repeat loci
in diverse populations of the world. Electrophoresis, 16:1659-1664
37- Barbujani, G., Magagni, A., Minch, E., Cavalli-Sforza, L. L. 1997. An
apportionment of human DNA diversity. Proc Natl Acad Sci USA,
94:4516-4519
38- Livingstone, F. B. 1997. On the non-existence of human races. In:
Ridley, M. Evolution. Oxford University Press, Oxford
62 Eubios Journal of Asian and International Bioethics 14 (March 2004)

concern. Over the Internet, anybody could express anything,


sell anything and mislead anyone, under the cloak of a
professional website and a flashy Domain name and E-Mail ID.
Anonymity means the concerned individuals are potentially free
of any responsibilities to the customers and thus not obliged to
perform according to ethical norms.

Quality Assurance, Accountability and Consumer Protection


One could easily see that anybody could promote virtually
anything over the Internet. Only a good web host and a flashy
website is all what is needed. Since most of these websites
operate in anonymity, and potentially out of the reach of law of
any single country, patients who have been deceived are less
likely to get protection/compensation from consumer reprisal
forums.

Privacy and Confidentiality


Privacy and Confidentiality are part of ethical conduct in a
real world physician-patient relationship. Over the Internet, there
is hardly anything private/confidential. Anybody from a
Webmaster to a hacker could have access to your personal
information. Most of the websites do not have a privacy policy or
Figure [1] A Screenshot from a website that claims to enlarge
reliable framework to prevent people from peeking into their
male genital organs in 30 days. The website claims it to be
consumers’ personal information. Though regulatory
Medically proven, but does not provide any evidence/details
frameworks [6] are emerging, there is hardly any compulsory
regarding research.
system to oversee the implementation of such frameworks over
a time-bound period.
Honesty, Disclosure and Candor Cross Border Activity and Legal implications.
The consumer has the right to know who is behind a Legal frameworks are highly variable. What might amount
website, and what his/her affiliations are- since they are of direct to an unlawful conduct in one country/region may not be the
importance to his health. It would also enable the consumer to same elsewhere. Similarly one drug that may be available with
make informed decisions, and to think of probable avenues of prescription in one country/region may be available elsewhere
malpractice. The fact is that most of the websites selling drugs without one. Moreover different countries have different
are really gateway websites, which redirect/link to bigger firms standards for production and marketing of drugs. This would
by virtue of some affiliate program. These websites [serving as also serve as potential areas of conflict between two parties.
middlemen] are little concerned about the quality of information Moreover, due to the lack of a Universal code of conduct, the
they provide or responsibility to consumers. In other words, consumers hardly have any avenues to have their complaints
these websites are interested in nothing but profit. redressed.
Consumers also have the right to honest analysis of
research findings. Many websites advertise of ‘Medically Experiences with the E-Health Adversities Research Database
Proven’ products, but hardly provide any information regarding [E-HARD]
the setting in which the study [if any] was conducted, and when The E-HARD [8] was set up in January 2003 to collect
and where [a scholarly journal] it was published. Stephen evidence related to E-Health adversities. To date three cases of
Barrett [7] says Herbal medications, could not possibly be sold fraud involving cyber pharmacies have been submitted, and
profitably on the Internet without deception, which includes (a) currently under evaluation. These websites were involved in
lack of full disclosure of relevant facts, (b) promotion or sale of marketing so-called ‘herbal preparations’ for diseases as varied
products that lack a rational use, and/or (c) failure to provide as Cancer and AIDS. One website even claimed to cure AIDS
advice indicating who should not use the products. Given the with their six week therapy.
number of websites selling such ‘Herbal” medications, anyone It is also amazing to note that these websites also
could just imagine how ethical the marketing practices on the significantly contribute to the menace of Unsolicited Commercial
Internet are. E-Mail [UCMs] or SPAM. Some of our unpublished research
shows Health related spam contribute to something around 10-
Informed Consent and Responsibility 12% of all Unsolicited commercial E-Mails.
Informed consent is a key pillar of trust and relationship in
real world. Over the Internet, consumers are potentially under- Conclusions
informed or worst un-informed. This raises the integrity of the Internet is slowly evolving into a new ‘Virtual World’ or the
consent provided by potential consumers. Most of the websites ‘Second World’ and is leaving its impact in our lives too. The
offer a disclaimer notice, according to which all liability is emerging E-Economy is also making its presence felt in all
restricted to refund of money. domains. The virtualization of Healthcare is also underway- with
the Emergence of CyberMedicine and Telemedicine as
Trust and Relationships: emerging technologies. Cyber-Pharmacies- a virtual extension
Physician-patient or Customer relationships virtually never of real world pharmacies also forms a significant part of the new
exist in the online world. The maximum liability in any case is economy. The ethical concerns regarding marketing of
minimized to refund of money. Thus lack of relationship in the medications online are myriad- most of them emerging from the
virtual world, with the potential of Internet to maintain anonymity anonymity and anarchy offered by the Internet. A regulatory
of concerned individuals leads to the deterioration of ethical approach to this problem is not possible due to the uncontrolled
conduct and quality of services. and anarchic structure of Internet.
The possible way out is perhaps trustmarks/seals like the
Anonymity HON code of conduct seal [9] and consumer Education.
Internet has created a situation wherein anybody could Coaxing more websites to join such accreditation programs
operate in total anonymity. This is perhaps the prime source for would significantly improve the state of E-Health. Moreover
Eubios Journal of Asian and International Bioethics 14 (March 2004) 63

setting up of websites that systematically collect evidence on


misconduct over the Internet is necessary. A host of such Introduction
websites, with interconnectivity would enable planning and From the very origin the question remains of whether
implementation of strategies aimed at improving the state of bioethical knowledge actually exists. Bioethics is a
affairs. multidisciplinary field of knowledge. But may be it is more "para"
than "multi"? Is it really possible to conduct the bioethical
References expertise in medicine, especially in family medicine? Basically,
1] Online Pharmacies Settle FTC Charges the term "bioethics" itself carries a deep contradiction in its
http://www.ftc.gov/opa/2000/07/iog.htm meaning, insofar it covers both the scientific substance (based
2] eHealth Ethics Initiative. eHealth code of ethics. Internet Healthcare on "bios" - life sciences achievements) and the ethical
Coalition, May 2000. www.ihealthcoalition.org/ethics/ehcode.html
substance (based on "ethike" - philosophical reasoning). To all
3] Eysenbach G.Online Prescribing of Sildanefil (Viagra®) on the World
Wide Web. Journal of Medical Internet Research 1999;1(2):e10 appearances current bioethics will preserve (and even worsen)
http://www.jmir.org/1999/2/e10/ this ambiguity and controversial character in its future
4]Bonakdar RA. Herbal cancer cures on the Web: noncompliance with developments. Hence, are we capable to achieve the foundation
The Dietary Supplement Health and Education Act. Fam Med 2002 Jul- for clear practical activities in bioethics?
Aug;34(7):522-7 To my firm belief, the given situation is a direct challenge
5] Scaria.V. Buying Sildenafil Citrate Online: are prospective buyers to the creation of a new basis for bioethics, as well as
informed of contraindications [in process of publication] [Preliminary philosophy and science on the whole. The judgment of Nicolei
Draft]
Lossky, which serves to me as an epigraph, clearly shows the
6] Crigger B. Foundations of the eHealth Code of Ethics
http://www.ihealthcoalition.org/ethics/code-foundations.html way to reaching this basis - through the synthesis of an a priory
7] Barett S.How to Spot a "Quacky" Web Site (intuitive, phenomenological) knowledge with an a posteriory
http://www.quackwatch.com/01QuackeryRelatedTopics/quackweb.html knowledge (of objective, empirical, and descriptive essence),
8] E-Health Adversities Research Database although this kind of synthesis is the greatest philosophical sin.
http://www.virtualmed.netfirms.com/ehard.html and Significantly, Lossky had endowed with particular powers the
http://www.cybermedicine.netfirms.com/ehard.html philosophical branch 'cosmology'. To prove this it might be
9] HON Code of Conduct http://www.hon.ch/Honcode sufficient to demonstrate his understanding of the task of
philosophy:
Competing Interests: The author maintains the E-Health ..."having studied the basic elements and aspects of the
Adversities Research Database [E-HARD]. He is also the author world, philosophy must detect the interconnection between them
of the research paper [4] on cyber pharmacies cited in this which forms the world-whole. Moreover, the world-whole,
paper. studied by the branch of metaphysics called cosmology,
contains concrete individual elements of such significance as for
Actualisation of the instance, the biological evolution, the history of humanity – and
philosophy must answer the question as to their meaning and
'Philosophical Functionalism' their place in the world-whole." (Lossky 1951, p. 402)
We do need cosmological thinking. Life on Earth is a
in Bioethics universal phenomenon in its substance. The latter is the
undeniable fact of natural sciences. Hence, we are substantially
- Konstantin S. Khroutski, Ph.D. inadequate in comprehension the cosmological (in Lossky's
Institute of Medical Education, Novgorod State University after meaning) foundations for universal philosophy and science. In
Yaroslav-the-Wise, Novgorod Velikiy (Russia) my context, for instance, I claim that either we will reach the
IME NovSU, A/B 123, PO-25, Novgorod Velikiy, 173025 Russia; creation of the rational basis for universal bioethics or the
E-mail: hrucki@mail.ru professional status, institutionalisation and future developments
of bioethics remain beyond the area of their lucid objective
Abstract understanding. In this, I fully support the claim of Prof. Jozef
Developing the original philosophical system, exhibited in Glasa, who puts forward the need for a new underlying
my previous publications in the Eubios Journal of Asian and anthropological paradigm:
International Bioethics (2002, 2003), I attempt to outline in this "The anthropological paradigm seems to be the decisive
paper, on the basis of the original 'philosophical functionalism', point of reference. It represents a particular conception of what
the conception of the universal Cosmist anthropology and the the human being is; an image which implicit or explicit grounds
deduced notion of the bioethics of individual’s health. The for everyday choices, thus determining models of behaviour,
proposed approach in bioethics is characterised as person- criteria for evaluation and motivation for action. The term
centric, health-centric and cosmist functional. Significantly, my "human nature," a guiding principle for ancient and medieval
demonstrating and actualising of the Cosmist theses relies on cultures, has become a question for the modern and post-
the first philosophical fundamentals: cosmological, ontological, modern culture of contemporary mankind. On the other hand,
epistemological. Substantially, Cosmist anthropology and human nature can be observed as an object of a great
bioethics treat a man as the bio-social-cosmist creature, but not anthropological project that should help to understand what and
merely a bio-social one. The core notion of the original who human beings really are, their proper place in the
approach is a person's Basic (Cosmist) Functionality, the biosphere and in the universe... Within the global project of
realisation of which leads a man to the entire ontogenetic well- human nature, it has to have a say in the case for the future of
being. humankind." (Glasa, 2001)
Key words: philosophy of Process, Cosmist universal
anthropology, basic functionality, bioethics of individual’s health Cosmist Basic Notions and Terms
The substantial characteristic of my original philosophical
"Philosophy is a science and therefore, like every other system was given in my previous publications in the EJAIB
science, it seeks to establish truths that have been strictly (2002, 2003), as well as in the other publications (Khroutski
proved and are therefore binding for every thinking being and 2000, 2001, 2002, 2003). Here, I want to develop in depth some
not only for a particular people or nation." core notions and terms, which might be crucial for
Nicolei O. Lossky. understanding the whole concept. I am content to exhibit my
(This sentence opens the chapter "Characteristic Features points now taking into account the critical comments of the
of Russian Philosophy" in N.Lossky's book "History of Russian colleagues that were caused by my presentation of the material
Philosophy").
64 Eubios Journal of Asian and International Bioethics 14 (March 2004)

on the XVIIth European conference on philosophy of medicine The cornerstone conception of the Cosmist anthropology
and health care in Vilnius, 2003. is the establishment of the three distinct functional macro-orders
Primarily, my cornerstone cosmological notion is CEPLE: of man's existence (functioning):
Cosmic Evolutionary Process of Life on Earth (my abbreviation Homo Sapiens animalis (HSA) - the direct function of the
for it is simply Process). Process is an objective phenomenon Biosphere.
verified by numerous scientific disciplines, including Homo Sapiens sapiens (HSS) - the direct function of Society.
comparative anatomy, biochemistry, etc., related to evolutionary Homo Sapiens cosmicus (HSC) - the direct function of Process.
history and, chiefly, to molecular biology. Therefore, Process is Both HSA and HSS are always Bio-Social creatures, and
an a posteriory notion precisely of objective and empirical not Bio-Social-Cosmist creatures. In other words, man in this
essence. Simultaneously, Process is an a priori notion, for it is perspective is a bio-organism, social actor, and unique person
solely revealed through rational (intuitive) cognition. Hence, the in his adaptation to the society, but he or she is not a Cosmist
notion of Process integrates a posterior and a priori thinking, agent carrying out his personal (functional, specific) contribution
disclosing the approach for universal comprehension of the to the one common Process. Cosmist philosophy replaces
phenomenon of the life on Earth. "being" (a basic concept that serves as a starting-point for any
The other substantial notion, which stresses the serious metaphysician) by "functioning," as a more basic
universality of the life on Earth, is 'subject'. In Cosmist Cosmist concept, which points to the necessity of active
philosophy 'subject' means the integrated functional subject, evolution for every living subject.
which forever integrates autonomously and hierarchically other A crucial point is: In recognising the notion of Process we
subjects (to be the functional whole) and, simultaneously, obtain the substance to which all Earth's living subjects can be
always being functionally integrated by the higher organised functionally reduced. Every living subject on Earth is ultimately a
subject (organism). In other words, from the cosmist point of function of Process - of the ultimate self-evolving organism of
view subject means every living organism on Earth: molecule, life. Reasonably, then, every living subject on Earth has
cell, biological organism, biosphere, human being, family, its/his/her basic (ultimate, cosmist) functionality. The notion of
community, social body, society, mankind, and, ultimately, man's basic functionality means that any subject is intrinsically
Process itself (CEPLE) - the one common whole cosmic and basically dedicated for the realisation and execution
evolutionary process of the life on Earth. ultimately of the special function.
Another cornerstone notion is 'emergent future', which In light of the Cosmist concept, basic cosmist
means the successive appearing of the integrated macro-level functionality (BCF) governs human ontogenesis. In other
of the ontogenesis of a subject's (man's) wellbeing (the words, basic functionality hierarchically organises man's entire
university for a schoolboy; the vocational body for a graduate, repertory of biological and social needs in one integral order.
etc.). In this, the term "emergence" substantially has the This order, in principle, repeats the hierarchy of the main stages
accepted meaning: the rise of a system that cannot be predicted of biological and social evolution on Earth. Hence, biological
or explained from antecedent conditions. and social needs may be considered tools for BCF to implement
Further, I would like to stress the cosmist meaning of the its self-unfolding and ultimate self-actualisation. In other words,
term 'society'. This has not the prevailing political meaning, but all biological and social needs of human beings conform to the
it relates to any community, structure, organization, or any other ultimate end of his or her specific functional contribution to
socially functioning body of people having common purposes of wellbeing in the shared Earth life Process. The latter is mainly
their organization. possible at the high creative level of mature social stability, the
It is also important to distinguish the meaning of the terms culminating point of man's ontogenesis.
'cosmist' and 'cosmic': the former stresses two points: a) the In course of this reasoning the fundamental principle of
intrinsic subjective origination of the primary perceptions of CosmoBiotypology has emerged. CosmoBiotypology may serve
man's creative activity; b) the deliberate character of a person's as a concrete cosmist law, which states: Every living subject on
creative activity, aimed at the achievement of the most desirable Earth is a natural (more accurately, cosmic) function of the
possible state of adaptation and development on the current higher-level congenerous subject and ultimately of Process
level of her or his existence and, simultaneously, the gratifying itself. Thus, every living subject on Earth naturally bears the
ascent on the successively higher level of man's entire biotypological traits of this intrinsic basic functionality and
ontogenesis. In other words, a person performs cosmist naturally relates to the appropriate ecological-social
creative activity basically on his or her own. In turn, the term environment. In other words, the principle of
'cosmic' puts a particular emphasis that a subject is ultimately CosmoBiotypology establishes the functional identity and thus
the function of Process. Finally, writing the word 'Cosmist' with a the universal meaning of the three macro-orders of man's entire
capital letter or in Italics accentuates its reference to the original wellbeing: satisfying subjective feelings and perceptions;
philosophical system I have proposed. adequate position in the social-ecological environment; and
Finally, the term 'creativity' has no correlation with biological constitution or biotype. The latter serves precisely to
supernatural factors, but designates precisely a person's fulfil the person's cosmist functional assignment. Thereby, the
inherent natural ability and energy to create: to originate, to CosmoBiotypological principle aspires to universalise
design, to invent, to bring into existence, etc. new products, or biomedical, social, and human knowledge – to unite rationally
results, or effects, etc. of one’s creative activity. man's subjective knowledge with objective knowledge of man
Original cosmological principles lay the foundation for the and, thus, to reconcile previously incompatible scientific and
advancement of a framework of ontological assumptions - the humanistic paradigms.
so-called ACW system: of Absolute (in regard to the all-
embracing evolutionary Process), Cosmist (universal, Conclusion
functionally intentional realisation of the ascending ontogenesis Prof. Darryl Macer, director of the Eubios Ethics Institute,
of any subject - living organism: biological, personal or societal, distinguishes at least three ways to view bioethics:
including man), Wholism (with reference to universal functional 1. Descriptive bioethics is the way people view life, their moral
integration of any subject into one whole - self-unfolding and interactions and responsibilities with living organisms in their
evolutionary ascending - Process). The definition of the ACW life.
system is exhibited in my previous publications. 2. Prescriptive bioethics is to tell others what is ethically good
or bad, or what principles are most important in making such
Cosmist Anthropology: Reconciling Scientific and decisions.
Humanistic Paradigms 3. Interactive bioethics is discussion and debate between
people, groups within society, and communities about 1 and 2
above. (Macer 1998)
Eubios Journal of Asian and International Bioethics 14 (March 2004) 65

In this course I claim the existence of the fourth way - - K. K. Verma, Ph.D.
bioethics of individual's health, the essence of which is a Retd. Professor of Zoology
person's self-realising his or her inherent route of wellbeing HIG 1/327 Housing Board Colony
(healthy, safe, satisfactory, happy) ontogenesis. Fundamentally, Borsi, DURG ñ 491001, India.
the proposed universal bioethics of individual's health is truly Email: kkverma@kkverma.com
personcentric, health-centric and of true wholistic subject-
subject essence. The subject-subject pattern means that an
explorer (a subject: scientist, doctor, specialist in bioethics, etc.)
treats any phenomenon of the one common evolutionary
process of the life on Earth (Process) not simply as an object of
scientific observation or analytical reasoning, but likewise as the
equally (in relation to him) integrated - in relation to Process -
subject, which (who) has its/his/her own functional assignment
and, thus, its/his/her own as past and present as emergent
future being and wellbeing. Moreover, relying on Cosmist
philosophical fundamentals, I logically claim that: A) exclusively
the personalist (subjective) level of consideration is
appropriate for the universal comprehension of phenomena of
the life on Earth, including the individual health of a man; and B)
that exclusively the cosmist functional approach can reach the
universal comprehension of the entire living world on Earth:
biological, personal, and societal.

References
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(http://business.hol.gr/~bio/HTML/PUBS/VOL6/HTML/glasa.htm)
Khroutski, K.S., and Veber V.R.: 2000. 'Health – a central ontological
problem ESPMH Conference, Krakow 2000 – Abstracts', Medicine,
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Khroutski, K.S.: 2000. 'Individual Health: New Definition and Ontological
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Khroutski, K.S.: 2001. 'Introducing Philosophical Cosmology', World
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Macer, D. R. J. 1998. Bioethics is Love of Life: An Alternative Textbook
Christchurch, N.Z.: Eubios Ethics Institute.

CORRECTION - Social Darwinism – a


misinterpretation of a scientific theory
On p. 13 under the point (d) it was said, “In the modern human
species biological evolution (in the meaning of speciation) has
stopped taking place 1.5 million years ago…”. Here it should be
“0.15 million years ago…” Apologies. 1.5 million years ago it
was H. erectus stage in human evolution!
66 Eubios Journal of Asian and International Bioethics 14 (March 2004)

News in Bioethics & Biotechnology control gene expression is reviewed in Nature 428 (2004), 281-
Comments are written in text form together with recent 6. Proteins can be made without DNA, SA (April 2004), 20-1.
references. This list continues from the last issue of EJAIB and Making ultra long DNA is discussed in NS (22 Nov. 2003), 8.
will continue. This list is available on-line topic-by-topic (and Making microbes by design is reviewed in Science 303
the on-line topical files have been updated), at: (2004), 158-61. Communication between bacteria is discussed
in SA (Feb. 2004), 22-3. Xylose fermentation by GM yeast is
http://www.biol.tsukuba.ac.jp/~macer/NBB.html reported in Bioresource Technology 92 (2004), 163-71. A
review of industrial enzymes is GEN 24 (15 March 2004), 1,
Genetic Engineering of Plants 15-6, 59.
Resistance for potato late blight has been engineered that is
race nonspecific, Trends in Plant Science 9 (2004), 5-6. A Biotechnology & the Public
conditional marker allowing both positive and negative A study of terror risk communication is in Biosecurity and
selection in plants has been made, NatBio 22 (2004), 455-8. Bioterrorism 1 (2003), 255-8; and on risk communication in
Genetic variation in plants is discussed in Nature Reviews general, BMJ 327 (2003), 1162-5, 1368, 1403-4; Public
Genetics 5 (2004), 248. Sequencing of a rice centromere has Understanding of Science 12 (2003), 203-9; Science 303
uncovered active genes, NatGen 36 (2004), 138-45. (2004), 630-2. The ethics of crossing species boundaries is
California is planning to plant drug-producing GM rice, discussed in Amer. J. Bioethics 3 (Summer 2003), 1-13, 20-1.
Nature 428 (2004), 591. Indian scientists have made a salt- Monsanto is spending much money to promote the image of
resistant rice by GM, Science 303 (2004), 308. A company in biotech in Brazil, Ram's Horn 217 (Jan. 2004), 3-4. There is a
New Zealand, trees and Technology, is preparing about 3 trend in Australia for increased risk perception but not an
million cloned Monterey pine trees for planting next year, increase in concern about biotechnology according to a new
NatBio 22 (2004), 261. A review of genetic enhancement of survey (Media release 11 Feb. 2004, contact Craig Cormick,
soybean oil for industrial uses is AgBioForum 6 (No.1, 2003), Biotechnology Australia, 0418-963914).
11-3. The future of biotechnology in soybeans is reviewed in Medical research sometimes raises media circuses, HCR 34
AgBioForum 6 (No.1, 2003), 8-10. The development of GM (Jan. 2004), 3; Morreim, EH. "High-profile research and the
wheat is expected soon, Ram's Horn 218 (Feb 2004), 5. media", HCR 34 (Jan. 2004), 11-24. Media ethics is also
discussed in Scientist (1 Dec. 2003), 53-4; Sociology of Health
Genetic Engineering of Animals & Illness 25 (Sept. 2003), 513-640; Public Understanding of
Mice have been cloned from olfactory sensory organs, Science 12 (2003), 123-45; Nature 426 (2003), 222-3; BMJ 327
Nature 428 (2004), 44-9. Fish sperm can be made to order, (2003), 1174; 328 (2004), 294; Lancet 363 (2004), 491. The
Nature Reviews Genetics 5 (2004), 167; PNAS 101 (2004), high profile of Japanese Nobel Prize winners is discussed in
1263-7. Nature 427 (2004), 282-3. The Japanese Science Council is
The genome sequence of rat has been published making being changed, Nature 428 (2004), 357.
further studies of genetics and disease possible, Science 303 The ethics of public consultation is discussed in Health
(2004), 455-9; Nature 428 (2004), 464-6, 475-6. On rodent Care Analysis 11 (2003), 15-25. An interesting series of public
models of hypertension, J. Physiology 554 (2004), 56-63. In meetings is being held in New Zealand to seek public opinion
general on genetics of complex traits in animals, Nature over whether human genes should be placed in other organisms
Reviews Genetics 5 (2004), 202-12. Artificial insemination in by the Bioethics Council, www.bioethics.org.nz. Participatory
beef cattle and fertility is discussed in J. Animal Science 82 research ethics in public housing is discussed in Science and
(2004), 987-93. Animal models of hypertension are discussed Engineering Ethics 9 (2003), 485-502. On biotechnology and
in TIG 20 (2004), 136-45. bioethics, CQHE 13 (2004), 185-92; NatBio 21 (2003), 1282;
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Conservation, which is more negative towards GM trials, 303 (2004), 1743-4; Nature 426 (2003), 593; 428 (2004), 6. At
Nature 427 (2004), 279. the same time approved researchers are making superbugs in
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countries is Biology International 45 (2003), 34-8. Debates how rapidly smallpox spreads, SA (Jan. 2004), 13-4. A book
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350 (2004), 539-41; SA (April 2004), 12-3; NS (21 Feb. 2004), diseases, Nature 428 (2004), 19; NS (10 Jan. 2004), 19.
11; Current Biology 14 (2004), R93-4; JAMA 291 (2004), 553- Monkeypox has been detected in the Western hemisphere,
5; Nature 427 (2004), 5, 766; NatMed. 10 (2004), 113. There is NEJM 350 (2004), 342-50.
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disease risks from food and testing, Science 303 (2004), 156-7; cattle, however it appears it may increase local incidence of
Lancet 363 (2004), 1084-5; NS (6 Dec. 2003), 20; (10 Jan. TB, Nature 426 (2003), 834-7. Also on TB, Nature 427 (2004),
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to screen blood for Chagas disease, Lancet 362 (2003), 1988. The involvement of caregivers in the informed consent
Stable SNPs have been reported in malaria genes in process for AIDS clinical trials is described in Nursing Ethics
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14 grand challenge topics chosen by the Gates Foundation for Science 303 (2004), 316, 954-5, 961; Lancet 362 (2003), 1728.
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132-3. DEET-based insect repellents appear to be safe for
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years found that insecticide-treated curtains reduced child The engineering of plants for phytoremediation has been
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368. Hybrid mosquitoes are suspected in West Nile virus of an open-cast coal mine by planting exotic tree species is
spread, Science 303 (2004), 1451. reported in Ecological Engineering 21 (2003), 143-51. A report
Delayed prescriptions can reduce antibiotic use in from remediation at US Dept. of Energy sites is Science 303
respiratory infections, BMJ 327 (2003), 1361-2, 1324-7. The (2004), 1615-6.
problems of antibiotic resistance in bacteria are discussed in
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9. JAMA 290 (2003), 2247-8; American Scientist 92 (Jan. 2004),
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70 Eubios Journal of Asian and International Bioethics 14 (March 2004)

The impact of climate change on ecosystems is discussed in Animal Rights


Science 303 (2004), 176-7, 1600-2; SA (March 2004), 40-7. In many cases the costs will outweigh the benefits of
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Science 303 (2004), 1461-2. On the impacts of climate change, 7. Protestors in the UK have ended plans for a primate research
MJA 179 (2003), 571-2. Volcanic eruptions are linked to El center at University of Cambridge, Nature 427 (2004), 471. A
Nino, Nature 426 (2003), 239-41. Wind power is discussed in UK legal decision may help stop harassment of employees of 7
NS (6 Dec. 2003), 30-33. Japanese companies who use animal testing at Huntingdon Life
Global warming and nuclear power are discussed in Sciences in the UK, Scrip Magazine (Dec 2003), 22-3. The
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nuclear weapons in North Korea, Science 303 (2004), 452-4; NS (28 Feb. 2004), 12-3. The negative effects of sonar on
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oceans, NS (20 Dec. 2003), 20. in the USA, declining numbers A series of papers on what makes humans human with
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endangered species, Nature 426 (2003), 592; BioScience 54 Current Biology 14 (2004), R148-9; Nature 427 (2004), 208-9;
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increased fears of illegal trade in elephant tusks, NS (20 March neuroscience research, NS (1 Nov. 2003), 52-5. The difference
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also has human health concerns, Nature 427 (2004), 277. 2003), 36-9; (20 March 2004), 38-41. A study of how people
Overall however human health depends upon biodiversity, may see the world in different ways is Science 303 (2004),
Environmental Health Perspectives 112 (2004), A12-3. 1617-8, 1634-40. Intention is discussed in Science 303 (2004),
Prospects for making money from bioprospecting are not clear, 1144-6, 1208-11. Book reviews on consciousness include
SA (Dec. 2003), 17-8; Nature 427 (2004), 576, 769. Nature 426 (2003), 604; 427 (2004), 783; 428 (2004), 603-4,
The impact of global warming is also to blame to smaller 606; SA (March 2004), 74-5. Development of the human frontal
numbers of North sea cod, NS (13 Dec. 2003), 8; Nature 428 cortex is related to mutations in GPR56, a G protein-coupled
(2004), 4. An overall calculation of extinction risk from climate receptor, Science 303 (2004), 2033-6. Object-specific responses
change is in Nature 427 (2004), 145-8. Reducing risks to in the cortex are described in Science 304 (2003), 115-7.
endangered ocean species is the goal of marine reserves that Learning is discussed in Nature 428 (2004), 378. A 3-D atlas of
are expected to be made in the USA soon, NS (15 Nov. 2003), the brain is expected later in 2004, NS (10 Jan. 2004), 32-3.
49; (21 Feb. 2004), 8; BioScience 54 (2004), 27-39. Hatcheries A small number of genes creates complex thoughts, Nature
may help for some endangered salmon, Science 303 (2004), 427 (2004), 681. Human variation in gene expression and brain
1980. In Norway salmon stocks are under threat from a has been surveyed, Nature 428 (2004), 757; and as discussed in
parasite, NS (28 Feb. 2004), 14. Antarctic biodiversity is the Animal Rights News section, comparisons with chimpanzee
discussed in Current Biology 14 (2004), R169-70. Pollution genome are also being made. On artificial intelligence, Nature
from sewage is one factor leading to decline in corals, NS (10 427 (2004), 680.
Jan. 2004), 12-3; Science 303 (2004), 1293; 304 (2004), 31. Discussion of why people often socialize with people of the
A call for tests of the presence of DNA on Mars are made in same sex is in NS (24 Jan. 2004), 35-7. Studies of why male
NS (27 March 2004), 19. A paper looking at inhabitable stars in gorillas have good relations may be because they are often
our Galaxy is in Science 303 (2004), 59-64. The cal for more related to each other, Nature 428 (2004), 383. Also on animal
space exploration is made in Science 303 (2004), 589. socialization, NS (20 Dec. 2003), 56-9. Studies of marmosets
has found they use their whole brain when thinking about sex
Eubios Journal of Asian and International Bioethics 14 (March 2004) 71

including regions associated with decision-making, like benefits, Nature 426 (2003), 787. Food high in purines may
humans, Science 303 (2004), 952. A book review of Why We increase risk of gout, NEJM 350 (2004), 1093-103. Diets high
Love is Nature 427 (2004), 396-7. Also on love, NS (22 Nov. in meat also pose dangers, NS (13 March 2004), 19. There is
2003), 18. doubt over a study that claimed multivitamins would help
postpone Alzheimer disease, BMJ 328 (2004), 67. Functional
Safety of Recombinant DNA Products foods are discussed in Nature 427 (2004), 284-6; BMJ 328
Alpha-Interferon has showed promise against SARS in (2004), 190-1.
monkeys, JAMA 290 (2003), 3222-8; Lancet 362 (2003), 293-4; UNICEF has issued another report warning on the dangers
Science 303 (2003), 1273. Post-exposure treatment with a of vitamin deficiencies, Lancet 363 (2004), 378; Bulletin WHO
recombinant inhibitor of factor VIIa/tissue factor may be useful 82 (2004), 230-1. Studies have shown that there was long term
in treatment of Ebola, if monkey experiments can be applied to mortality after the severe starvation during the siege of
humans, Lancet 362 (2003), 1953-8. Gamma-1b interferon Leningrad, BMJ 328 (2004), 11-4. Childhood stunting from
may not aid patients with idiopathic pulmonary fibrosis, NEJM inadequate water and sanitation is great today also, Lancet 363
350 (2004), 125-33. The use of pharmacogenomics for (2004), 94-1, 112. Yeast life-span extension by calorie
application of recombinant growth hormone is discussed in restriction is analyzed in Science 302 (2003), 2124-6.
Amer. J. Pharmacogenomics 2 (2002), 93-111. A paper on the Preventing foodborne disease is important, NEJM 350 (2004),
quality of life of persons living with achondroplasia is Prenatal 437-40; JAMA 290 (2003), 2788-9.
Diagnosis 23 (2003), 1003-8. The safety of recombinant The EU has defend the new traceability and labeling rules,
insulin is not clear for some persons, GeneWatch 16 (Nov. Food Chemical News (22 March 2004), 5-7; though they are
2003), 3-5. Use of recombinant follicle stimulating hormone for seen as barriers to trade by others, Food Chemical News (15
ovulation induction is reported in BMJ 328 (2004), 192-5. G- Dec. 2003), 8-9. In the USA, 77% of consumers said that they
CSF therapy with peripheral blood stem cells in myocardial would pay more for beef certified free of BSE, and one third of
infarction is reported in Lancet 363 (2004), 751-6, 746. persons were very concerned about the BSE finding, Food
A DNA vaccine that may protect allergy sufferers against Chemical News (2 Feb. 2004), 11-2. Concerns over salmon are
allergy has been developed in Japan, Biotechnology News 24 (4 also being raised, Science 303 (2004), 154-5, 226-9; NS (17
March 2004), 3-4. Cancer vaccines may boost survival after Jan. 2004), 3, 8; JAMA 291 (2004), 929-30. Aquaculture should
kidney tumours are removed, Lancet 363 (2004), 583, 594-9; be more sustainable, Nature 426 (2003), 378-9.
NS (28 Feb. 2004), 17. There is some success, GEN 24 (15 The FDA is reconsidering its position on open
March 2004), 1, 10, 12-3; NatMed. 9 (2003), 1354-5; JAMA commercialization of meat and milk from cloned animals,
291 (2004), 550-1. Another cancer vaccine trial was halted, NatMed. 9 (2003), 1444; NatBio 21 (2003), 1415-6. A UK
NatMed. 10 (2004), 3. Use of an anti-interleukin-5 antibody in BMA report said more study should be done to prove GM food
hypereosinophilic syndrome is reported in NEJM 349 (2003), is really beneficial compared to other food, BMJ 328 (2004),
2334-9. Erythropoietin may impair, not improve, cancer 602. (www.bma.org.uk/GMFoods). The first commercially sold
survival, NatMed. 9 (2003), 1439. GM-labeled beer in the world is sold in Sweden, NS (7 Feb.
2004), 6; NatBio 22 (2004), 259. On EU GM food regulation,
Food safety NatBio 22 (2004), 149, 383-4. DNA chips are testing for
Ways to combat against obesity are discussed in The Edge mixing of meat from different animal sources, NS (6 March
(ESRC, UK) 15 (March 2004), 16-21; MJA 179 (2003), 577-9; 2004), 12-3. Angola has refused GM cereal, Int. Herald
BMJ 327 (2003), 1125; 328 (2004), 363; Lancet 363 (2004), Tribune (31 March 2004). A general discussion of GM food is
182, 211-2, 339; NS (20 March 2004), 5; Nature 428 (2004), in FDA Consumer (Nov. 2003), 28-33. On the fate of
239, 244; JAMA 291 (2004), 1186-8. Some persons have transgenes in the human gut, NatBio 22 (2004), 170-2
surgery for obesity, NEJM 350 (2004), 1075-9. Links between
obesity and cancer are being tested, JAMA 290 (2003), 2790-1. Disease Risks & Drugs
APOE and TGF-beta1 genes are associated with obesity The regulation of drugs and clinical trial abuses in India are
phenotypes, JMG 40 (2003), 918-24. Estimates of ideal body- discussed in Indian J. Medical Ethics 1 (2004), 2-5, 11-21.
mass index among Asians are discussed in Lancet 363 (2004), Some local governments in the USA have been buying cheaper
157-63. The US has banned the dietary supplement ephedra drugs in Canada, BMJ 327 (2003), 1126; JAMA 290 (2003),
because of safety concerns, Nature 427 (2004), 90. The sugar 2921-5. European prices are also cheaper, Economist (31 Jan.
industry has criticized a WHO report on healthy eating, Int. J. 2004), 53-4. Counterfeit drugs are discussed in NEJM 350
Health Science 33 (2003), 831-3; Lancet 363 (2004), 1068-70. (2004), 1384-6. On ethical issues, Miller, FG. Et al. "Ethical
The USA has also criticized the proposed new policy on diet, issues concerning research in complementary and alternative
BMJ 328 (2004), 245. On the diet industry, Nature 428 (2004), medicine", JAMA 291 (2004), 599-602. Trade in traditional
252-4. Diabetes may be linked to obesity through adipocytes medicines is discussed in NatBio 22 (2004), 263-5; SA (Dec
and macrophages, NatMed. 10 (2004), 126-7. Preventing 2003), 26. The trade is causing degradation of biodiversity, NS
diabetes in south Asians is discussed in BMJ 327 (2003), 1059- (10 Jan. 2004), 10-1. Ethics of public health surveillance is
60. discussed in Science 303 (2004), 631-2.
Coffee consumption has an inverse relationship with type 2 The drug Lipitor has been linked to amnesia, NS (6 Dec.
diabetes mellitus in Finnish men, JAMA 291 (2004), 1213-9. 2003), 14. A website that links the way genes influence drugs is
Folic acid reduces the risk of ischemic stroke, BMJ 328 (2004), www.pharmgkb.org, Science 303 (2004), 443. On monitoring
211-4, 247. Omega-3 fatty acids have benefits for health, and drug treatment, BMJ 327 (2003), 1179-81, 1222-5. Doctors
may be in both fish and plants, BMJ 328 (2004), 30-5, 406. continue to use treatments that do not work, BMJ 328 (2004),
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food is causing many problems however, Lancet 362 (2003), BMJ 327 (2003), 1357-8. Psychiatric drugs are discussed in
1593; NS (29 Nov. 2003), 16. However, chocolate can have NEJM 349 (2003), 2369-71. On statins, JAMA 290 (2003),
72 Eubios Journal of Asian and International Bioethics 14 (March 2004)

2243-5; Lancet 362 (2003), 1498; BMJ 328 (2004), 400-2, 500-
1. A review of aspirin is NS (7 Feb. 2004), 36-9. Birth Control
Lifestyle change to alter risk of diabetes is useful, BMJ 327 The problems of maternal mortality are discussed in
(2003), 1120-1. Ethics of recommending lifestyle change is JOGNN (March 2004), 153; Lancet 363 (2004), 989-93. The
discussed in JAMA 290 (2003), 2660-1. Self-poisoning with rising global population and limits for our planet are discussed
pesticides is reviewed in BMJ 328 (2004), 42-4. Tests on in NS (8 Nov. 2003), 19; BioScience 54 (2004), 195-204. Some
pesticide safety on humans may be conducted in USA now, Catholic leaders have claimed that HIV passes through
Science 303 (2004), 1272; Nature 427 (2004), 770-1. On condoms, NatMed. 9 (2003), 1443.
occupational safety, Lancet 363 (2004), 673-4; JAMA 290 Contraceptive research is reviewed in NatMed. 10 (2004),
(2003), 3069-70. Pet ownership and health is discussed in MJA 213; NEJM 350 (2004), 307-8. On emergency contraception,
179 (2003), 460-1. On the hygiene hypothesis, Nature 428 NEJM 349 (2003), 1830-5. Research to make a male
(2004), 354. Asthma rates are increasing, NS (27 March 2004), contraceptive is discussed in NS (10 Jan. 2004), 38-41.
36-9. On stress in cities, Science 303 (2004), 463. A discussion of Chinese family planning is in Conscience
A Netherlands Health Council report is addressing the 24 (Winter 2003-4), 25-32. Delayed marriage age in women is
impact of passive smoking, Network 19 (March 2004), 8-12. shown in SA (Jan.? 2004), 17. The use of IUDs is discussed in
On the dangers of ionizing radiation in medicine, BMJ 327 CMAJ 169 (2003), 585. A review of sexuality in medieval
(2003), 1166-7; 328 (2004), 19-21; Lancet 363 (2004), 340; NS Croatian sources is Croatian Medical J. 45 (2004), 25-30.
(6 March 2004), 10. A medical response to nuclear incidents is Sexual orientation is discussed in BMJ 328 (2004), 469; NEJM
prepared in BMJ 328 (2004), 568-72. On risks of cancer from 350 (2004), 333-41. A US inquiry has found NIH funded
mobile phones, BMJ 328 (2004), 124, 292. A Swedish study of sexuality studies can continue, Science 303 (2004), 741. A
extremely low frequency magnetic fields suggests dangers from book review of The Oxytoxin factor is NatMed. 10 (2004), 122.
welding, Epidemiology 14 (2003), 420-6. There is little new A book review of Adam's Curse: a Future without Men is
evidence that EMF fields are harmful, Network 19 (March Lancet 363 (2004), 578.
2004), 27-8. Discussion of HRT is in JAMA 291 (2004), 1434; NatMed.
Traffic safety is discussed in Bulletin WHO 81 (2003), 916- 10 (2004), 121; BMJ 328 (2004), 357-8, 371-5; NEJM 350
7; NS (13 Dec. 2003), 23; BMJ 327 (2003), 1455-6. An (2004), 991-1004.
international study on depiction of old persons on traffic signs
is BMJ 327 (2003), 1456-7. Embryo Status
The ethics of embryo research and natural reproductive
Patenting & Business lotteries are discussed in CQHE 13 (2004), 68-95, 110-2. The
Benefit sharing from genomics is discussed in Health Law US Congress Partial-Birth Abortion Ban Act 2003 is
Review 12 (2003), 36-8. Patenting of genes is debated in reproduced in BME 194 (2004), 8-11. There has been much
Health Care Analysis 11 (2003), 119-30; Health Law J. 10 discussion, Lancet 362 (2003), 1464, 1509; BMJ 327 (2003),
(2002), 123-46; Science 303 (2004), 1757-8; NatBio 22 (2004), 1009; NEJM 350 (2004), 184-6. Several US judges have issued
231-2. The question of expired patents on cell lines, SA (Dec. subpoenas for abortion records, Lancet 363 (2004), 626. A
2003), 25. Patent enforcement is discussed in SA (April 2004), historical review of US abortion policy 1951-1973 is in AJPH
22. On IP and the US constitution, Colombia Law Review 93 (2003), 1810-9. A European Court of Human Rights is
(2004), 272-362. On profits from native medicines, NS (28 Feb. considering an abortion case, BMJ 327 (2003), 1367. A UK
2004), 15. case of late abortion for a fetus with cleft palate is being
The issue of ghost writers for pharmaceutical companies is debated legally, BMJ 327 (2003), 1307. In the UK it is
discussed in BME 194 (2004), 4. The ethics of receiving gifts necessary to give consent before embryos are used in research
from industry is discussed in Amer. J. Bioethics 3 (Summer (see ART for cloning discussion), BME 191 (2004), 5-6. A
2003), 39-46; JAMA 290 (2003), 2404-7. A report on book review of A Child is Born is Lancet 363 (2004), 497.
academic-industry relationships in the life sciences is in NEJM The early induced abortion of severely handicapped infants
349 (2003), 2452-9; Nature Reviews Molecular Cell Biology 5 is debated in Linacre Quarterly 70 (2003), 218-22. In the UK
(2004), 243-7. Industry sponsored studies of drugs are twice as mothers suspected of killing their babies might be dealt with
likely to have positive conclusions, BMJ 327 (2003), 1006. The outside of the criminal system, BMJ 328 (2004), 425. Trends in
roles of civil society in Thailand in public health as a counter to elective termination of pregnancy between 1989 and 2000 in
commercial pressures is reviewed in Lancet 363 (2004), 560- the French county of Isere is reported in Prenatal Diagnosis 23
63. Also on ethics of business, NEJM 349 (2003), 1980-1; (2003), 877-83. Pregnancies that end in spontaneous or induced
Bulletin WHO 82 (2004), 74-5. New Zealand is planning to ban abortions do not increase breast cancer rate, Lancet 363 (2004),
direct drug advertising, BMJ 328 (2004), 68-9. On Canadian 1007-16.
policy on drug adverts, CMAJ 169 (2003), 405-12, 425-7.
On biotechnology in Australia, NS (22 Nov. 2003), 56-9; Cloning and stem cells
China, GeneWatch 17 (Jan. 2004), 10-12; in Japan, NatBio 21 The UN has left the debate on human cloning on hold,
(2003), 1256-7; in Germany, NatBio 22 (2004), 257-8; in ready to resume later in the year, HCR 34 (Jan. 2004), 5-6;
ScanBelt NatBio 22 (2004), 355; in UK, NS (13 March 2004), Current Biology 13 (2003), R937-9. Those who have comments
52-3; in Russia, The Scientist (15 Dec. 2003), 50. A book on this should send to the editor who is working on a report for
review of Daniel Callahan, What Price Better Health? (Univ. United Nations University on the issues for consideration when
California Press 2003, 341pp.) is Science 303 (2004), 1613-4. the UN General Assembly revisits the issue. On ethics and
On biotechnology business centers, Nature 428 (2004), 121-2. cloning stem cells, Monash Bioethics Review 22 (Jan. 2003), 8-
A discussion of generic and similar "me-too" products is NEJM 24; New Zealand Bioethics J. 5 (2004), 22-8, 29-30; JME 29
350 (2004), 211-2. On science reforms in Japan, Science 303 (2003), 207; Sociology of Health & Illness 25 (2003), 793-814;
(2004), 1746; 304 (2004), 41. Biodefense research is attracting Nature 426 (2003), 603; 428 (2004), 587; NS (21 Feb. 2004), 3.
some companies, NatBio 22 (2004), 387-91.
Eubios Journal of Asian and International Bioethics 14 (March 2004) 73

A paper in Italian on cloning ethics is in Bioetica e Cultura 12 Sex selection is discussed in Indian J. Medical Ethics 1
(No. 2, 2003), 283-8. Against reproductive cloning, NS (22 (2004), 53; GeneWatch 17 (Jan. 2004), 3-5; BMJ 327 (2003),
Nov. 2003), 23; (24 Jan. 2004), 4; BMJ 328 (2004), 185; 1007. The UK HFEA has recommended a ban on it, BMJ 327
Lancet 363 (2004), 827-8. The use of pluripotent adult germ (2003), 1123. Gamete donor anonymity is discussed in Health
cells in treatment is discussed in Ford, NM. "Using pluripotent Law Review 12 (2003), 39-45; F&S 81 (2004),527-30. On
germ cells in regenerative medicine. An ethical alternative", family members as gamete donors or surrogates, F&S 81
National Catholic Bioethics Quarterly 3 (2003), 697-706. (2004), 1124-9. The UK is expected to remove anonymity for
There was controversy over the departure of two members sperm donors, BMJ 328 (2004), 244. Israel is allowing the
of the US President's Bioethics Council who were positive removal of sperm from dead men at the request of their wives,
towards stem cell research, Science 303 (2004), 1447. Harvard BMJ 327 (2003), 1187. Genetic paternity testing is discussed in
University is setting up a privately funded US$100 million CQHE 13 (2004), 49-60. On use of ARTs for HIV infection,
institute for stem cell research, Science 303 (2004), 1453; JME 29 (2003), 313-29. Scandinavian recommendations on
Nature 428 (2004), 8. Stem cell research might be a ballot issue sperm donation and women as research subjects are in BME
in California, Science 303 (2004), 293; NS (20 March 2004), 7. 191 (2004), 8-11. On suggested legal changes to the regulation
New Jersey also has backed use of stem cells, NatBio 22 of ART in New Zealand, New Zealand Bioethics J. 4 (2003), 4-
(2004), 142. 7. On human chimeras, NS (15 Nov. 2003), 34-6.
European Parliament members approved the funding of
stem cell research using human embryos, in countries that do Fetal Environment & Neonates
not outlaw it, BMJ 327 (2003), 1248. On EU regulation of Genetic susceptibility to neural tube defects vary with
stem cell research, JME 29 (2003), 203-8; NatBio 22 (2004), offspring phenotype, Clin. Gen. 64 (2003), 424-8. Use of folic
157-8. Spain will support stem cell research, Nature 428 acid is supported in NEJM 350 (2004), 101-3. A call for
(2004), 247. On policy in China, Nature 427 (2004), 278. systematic identification of drugs that cause birth defects is
Researchers in Korea have published results of making NEJM 349 (2003), 2556-9.
human ES cells from a cloned human embryo, Woo Suk The increasing use of cesareans in Europe are discussed in
Hwang et al., "Evidence of a pluripotent human embryonic Time (5 April 2004), 42-9. Shaken baby syndrome is discussed
stem cell line derived from a cloned blastocyst", Science 303 in BMJ 328 (2004), 719-21; BME 193 (2004), 13-7. Low breast
(2004), 1669-74, 937-9, 1581; Nature 427 (2004), 664; NatBio feeding rates in the USA is reviewed in AJPH 93 (2003), 2000-
22 (2004), 361; JAMA 291 (2004), 1185-6. This type of 10.
experiment could be legally performed in some countries but Papers on the topic of birth order and rebelliousness in
not in others. More ES cell lines are needed, NEJM 350 (2004), children are in Politics & the Life Sciences 19 (2000), 135-246.
1275-6, 1351-2; NatBio 22 (2004), 159-63, 399-400. On the On mentoring to reduce risk of antisocial behaviour in children,
potential for stem cell therapy, NatBio 22 (2004), 283-5; NS (21 BMJ 328 (2004), 512-4. The ethics of male circumcision are
Feb. 2004), 6-7, 16-7; BMJ 328 (2004), 484; Lancet 363 discussed in Amer. J. Bioethics 3 (Spring 2003), 35-48. On
(2004), 581. Making stem cells is discussed in Nature 426 perinatal mortality in rural China, BMJ 327 (2003), 1318-22.
(2003), 490-1. Embryonic germ cells and male gametes can be The FDA has issued an alert on possible suicidal risk from use
made from ES cell lines in mice, Nature 427 (2004), 106-7, of antidepressants in children, JAMA 290 (2003), 2334-5;
148-54. Science 303 (2004), 745. Autism is discussed in Lancet 363
(2004), 742-3; BMJ 328 (2004), 226-7, 364; Nature 426 (2003),
Assisted Reproductive Technology (ART) 373; 428 (2004), 470-1. The importance of grandparents in
A discussion of the concept of civil disobedience in the human education is discussed in Nature 428 (2004), 116-8,
context of ARTs is Turkish J. Medical Ethics 4 (2003), 215-20. 650-2, 128-9.
The suggested UK HFEA code of practice is in BME 192
(2004), 8-11. A debate on ethics of ART and genetics is Genetic Disease Markers
Conscience 24 (Winter 2003-4), 10-8; GeneWatch 17 (March Mutations in dynein motor complex cause motor neuron
2004), 11, 14. A booklet called Bloodlines has been made by disease, Clin. Gen. 64 (2003), 377-81. A study of the genetic
Backbone media (www.pbs.org/bloodlines, 2003). Community epidemiology of alpha-1 antitrypsin deficiency is Clin. Gen. 64
attitudes to ART in Australia are reviewed in MJA 179 (2003), (2003), 382-97. A series of papers on genetics and physiology
536-8. On ART mistakes, JME 29 (2003), 205-6. The UK will are in J. Physiology 554 (1 Jan. 2004), 1-244. Genetics and
give couples three times access to IVF under NHS, BMJ 328 migraine are discussed in Amer. J. Pharmacogenomics 2
(2004), 482. Calls for open access to IVF are in BMJ 327 (2002), 329-43. There has been extensive gene traffic on the
(2003), 1226. On health impacts of IVF, Nature 428 (2004), mammalian X chromosome, Science 303 (2004), 537-40.
590; and the success of IVF, NS (17 Jan. 2004), 7. An online Papers on serotonin transporter genetics and behaviour are
egg service now exists, NS (28 Feb. 2004), 4; in Genes, Brain and Behaviour 2 (2003), 332-80. Techniques to
www.ManNotIncluded.com. Italy is expected to pass a new law map quantitative traits using multiple phenotypes are reported
on ART, BMJ 328 (2004), 9. The desire of infertile patients for in Human Heredity 55 (2003), 1-26.
multiple births is discussed in F&S 81 (2004), 500-4, 526. A Obesity and genetics are discussed in Clin. Gen. 64 (2003),
study of why couples discontinue IVF is F&S 81 (2004),258- 380-1.
61.
The definition of infertility is discussed in Bioethics Genetic Screening Methodology
Research Notes 15 (Dec 2003), 45-7. Research using mice Use of a one primer array for testing over 10,000 SNPs is
suggests adult females may produce eggs, Science 303 (2004), reported in Genome Research 14 (2004), 414-25; also see
1593. Mouse eggs have been fertilized by artificial sperm, NS Nature 427 (2004), 91; 428 (2004), 377-8. They can also be
(13 Dec. 2003), 19. used for bacteria testing, Nature 428 (2004), 359. Microarrays
are discussed for cancer profiling in Lancet 362 (2003), 1428,
74 Eubios Journal of Asian and International Bioethics 14 (March 2004)

1439-44; Nature 428 (2004), 379-80; Science 303 (2004), susceptibility is in NEJM 349 (2003), 2080-1; Annual Report of
1754-5. The question will be how many conditions to screen GenomeCanada 2002/2003; BMJ 328 (2004), 148-51; JMG 40
for, BMJ 327 (2003), 1117. (2003), 807-14. The dilemmas for a Jewish rabbi discussing
On first trimester screening for Down syndrome, NEJM 350 prenatal diagnosis are discussed in NS (14 Feb. 2004), 44-7.
(2004), 619-21; Prenatal Diagnosis 23 (2003), 1086-91. Genetic counseling is discussed in BMJ 327 (2003), 1038-40;
Detection of cell-free fetal DNA in maternal blood is AJHG 74 (2004), 393-4; NZFP 30 (2003), 420-4. An obituary
progressing, JAMA 291 (2004), 1114-9, 1127, 1135-7; Prenatal to Dorothy Wertz is in NatGen 4 (2003), 295. Providing
Diagnosis 23 (2003), 1077-82. Genetic testing of sperm may audiotapes and extra material minimizes anxiety in more
become possible, NS (1 Nov. 2003), 19. On preimplantation persons about the testing, Prenatal Diagnosis 23 (2003),1060-
diagnosis for chromosomal translocations in miscarriage, F&S 7.
81 (2004), 30-4. A new supplement report is Parens, E., "Genetic differences
Newborn screening may be expanded, JAMA 290 (2003), and human identities. On why talking about behavioral
2564-72, 2606-8; MJA 179 (2003), 400-1, 412-5; AJMG 125C genetics is important and difficult", Special Supplement, HCR
(2004), 35-41. 34 (Jan. 2004), S1-36. The ethics of funding and controlling
genetic research on behaviour is discussed in light of the
DNA Fingerprinting & Privacy Nuffield Council report in Genes, Brain and Behaviour 2
The text of the UNESCO International Declaration on (2003), 321-31. On ethics of pharmacogenetics, BIOForum
Human genetic Data can be viewed on the UNESCO IBC Europe 6 (Nov. 2003), 319-21; a review of the Nuffield
homepage. It is also reproduced in BME 192 (2004), 13-20. The Council report is BME 193 (2004), 18-21. Population genetic
text of the European Group of Experts in Science and New screening is debated in Eur. J. HG 11 (2003), 903-5; MJA 179
Technologies on Genetic testing in the workplace is in BME (2003), 517-8. A series of papers in English and French on
192 (2004), 21-4. The general use of medical examinations for genetics and ethics are in IJB 14 (Sept. 2003), 11-226; also
employment is discussed in J. Law & Med. 11 (Aug. 2003), 93- papers in English in Developing World Bioethics 3 (2003), 103-
102. On genetic privacy, NEJM 350 (2004), 1452-3; NS (20 85; J. Clinical Ethics 13 (2002), 316-23; NEJM 349 (2003),
March 2004), 20-1. A study of patient information privacy in 1870-3.
public lifts in hospitals is in BMJ 327 (2003), 1024-5; and in Ethics of preimplantation diagnosis is discussed in JME
hospitals, Nursing Times 99 (2 Dec. 2003), 18-21; JME 29 29 (2003), 213-6, 217-9; JAMA 291 (2004), 927+. Discussion
(2003), 220-4, 348-52. China's freedom of information bill is of the ethics of selecting children is in Bioethics 18 (2004), 72-
reviewed in NS (13 Dec. 2003), 21. 83; JME 29 (2003), 369-70.
A paper on the implications of genetic testing for the UK On eugenics, IJB 14 (Sept. 2003), 17-32; Monash Bioethics
insurance industry is Community Genetics 5 (2002), 102-9. A Review 20 (April 2001), 11-43; BMJ 328 (2004), 411. Gene
comparison of insurance and testing in different countries is culture coevolution is seen between cattle milk protein genes
Simon, J. "Genetic testing and insurance: An international and human lactase genes, NatGen 35 (2003), 311-7. IQ and
comparison", IJB 14 (Sept. 2003), 59-78; and on the general economics is discussed in Heredity 92 (2004), 359-62. On
topic, Monash Bioethics Review 22 (Jan. 2003), 25-41; Lancet nature versus nurture, NatGen 35 (2003), 199-200. Past
363 (2004), 395-6; Eur. J. HG 11 (2003), 909-10. On law and treatments for homosexuality are discussed in BMJ 328 (2004),
biological and family identity, IJB 14 (Sept. 2003), 81-92. 427-32; also see NS (17 Jan. 2004), 36-9. Disability is
A review of the proposed expansion of US federal DNA discussed in CQHE 13 (2004), 34-40. Stutterers have sued over
databases is GeneWatch 17 (March 2004), 3-6. DNA evidence a research study, BME 191 (2004), 3-4. Racism in USA is
in crime is discussed in NEJM 350 (2004), 313-4; NS (1 Nov. discussed in Amer. J. Bioethics 3 (Spring 2003), 1-11. Lessons
2003), 18. National DNA databases need to be made safer, from the Holocaust for teaching nursing ethics are given in
Lancet 362 (2003), 1761-2. The ethics of stored tissue archives Nursing Ethics 11 (2004), 138-49.
is discussed in JME 29 (2003), 343-7; BMJ 327 (2003), 1304;
Lancet 363 (2004), 377. On the Icelandic DNA database Gene Therapy
coding, Bioethics 18 (2004), 27-49. The German National China is the first country to approve commercial use of gene
Ethics Council has a new opnion on Biobanks for research therapy, NatBio 22 (2004), 3-4; NatMed. 10 (2004), 9. It is for a
(Contact Email: kontakt@ethikrat.org). A proposal for a new type of cancer therapy. US FDA regulation of adverse gene
way to distribute and store genetic resources is in Nature therapy events is discussed in Politics & the Life Sciences 19
Reviews Genetics 5 (2004), 223-37. (2000), 261-8. Arguments against modification of the germline
There is criticism of the use of ethnic profiling by Japanese are in Salvi, M. "What is wrong in modifying the human
police, Nature 427 (2004), 383. A criticism of the short 4 week germline?", IJB 14 (Sept. 2003), 33-44. Arguing for freedom is
period given in the UK for public comments on biobank is in Robertson, JA., "Procreative liberty in the era of genomics",
BME 191 (2004), 1. Amer. J. Law & Medicine 29 (2003), 439-87. Enhancement is
discussed in NEJM 350 (2004), 1368; Bioethics 18 (2004), 1-
Ethics & Genetic Screening 26; BMJ 327 (2003), 1293328 (2004), 715; NatMed. 10 (2004),
A paper on Pakistani attitudes towards carrier testing for 227; NatBio 11 (2003), 1280-1. Regulation of gene therapy in
thalassemia in adults is Community Genetics 5 (2002), 120-7. Japan is discussed in NatBio 22 (2004), 343-5. In general on
Attitudes towards screening for late onset genetic diseases in gene therapy, Science & Medicine (June 2003), 122-4; Nature
Flanders are reported in Community Genetics 5 (2002), 128-37. 427 (2004), 779-81.
A Netherlands Health Council report on screening for Down A website for gene therapy trials in USA is
syndrome in early pregnancy is Network 19 (March 2004), 24- www.gemcris.od.nig.gov. On gene therapy for diabetics, Amer.
5. Maternal education in France modified the age-related J. Pharmacogenomics 2 (2002), 129-34. Gene therapy
increase in prevalence of Down syndrome, Prenatal Diagnosis prospects for ParkinsonIs disease are reviewed in Amer. J.
24 (2004), 79-82. Discussion of screening for cancer Pharmacogenomics 2 (2002), 135-46. The clinical protocol for
Eubios Journal of Asian and International Bioethics 14 (March 2004) 75

a phase 1 vaccine safety and chemotherapy dose-finding trial of discussed in Science 302 (2003), 2073. Data safety monitoring
an allogenic GM-CSF secreting breast cancer vaccine is in boards are discussed in NEJM 350 (2004), 1143-7. The use of
Human Gene Therapy 15 (2004), 313-37. Possible links of scientific evidence in court is discussed in SA (Dec. 2003), 12-
certain gene therapy to leukemia are discussed in JAMA 290 3; NS (31 Jan. 2004), 3. The EU has criticized the execution in
(2003), 2535. Arkansas on 6 January 2004 of a mentally ill prisoner
forcefully medicated, Lancet 363 (2004), 220. Accusations of
Human Genome Project (HGP) bias have prompted a review of ethical guidelines, Nature 426
A paper explaining HapMap is International HapMap (2003), 741.
Consoritum, "The International HapMap project", Nature 426 Wrong diagnoses are killing patients, NS (21 Feb. 2004),
(2003), 789-96. Discussion of HapMap is also in Nature 426 12-3. Medical mistakes are reported in BMJ 328 (2004), 55,
(2003), 739. A paper on the way genomics is being applied is 199-202; BME 194 (2004), 17-24. A study of persons who were
Bittles, AH. "Genomics and the changing profile of human operated on immediately after an intraoperative death found no
disease", Biology International 45 (2003), 3-8. A letter by LL increase in mortality however a longer stay in hospital, BMJ
Cavalli-Sforza on the HGDP is in Nature 428 (2004), 467. 328 (2004), 379-82. The new UK Council for the Regulation of
Discussion of the concept of race is in SA (Dec. 2003), 50-7; healthcare professionals has expressed concern over some
Nature 427 (2004), 123-4, 275-8, 487-8; EJAIB 14 (March GMC rulings, BMJ 328 (2004), 541. The GMC has admitted
2004). some mistakes in the past, BMJ 327 (2003), 1248. On self-
The charitable trust as a model for genomic databanks is regulation of medical professionals in the UK, BMJ 328 (2004),
discussed in NEJM 350 (2004), 85-6. On genomic medicine, 248. A UK national system for reporting medical errors has
NEJM 349 (2003), 2170-1; Nature Reviews Genetics 5 (2004), been launched, BMJ 328 (2004), 481. There is allegation of
311-7. On comparisons to chimpanzees, Nature 427 (2004), unauthorized human experiments in the UK being made against
208-9; Genomics and Proteomics 3 (Nov. 2003), 18-23. On the the person who is involved in claiming links between MMR
rat genome sequence, Nature 428 (2004), 493-521; Science vaccine and autism (see Diseases and Vaccine News section),
303 (2004), 455-8; and the dog genome, Heredity 92 (2004), BMJ 328 (2004), 726.
273-4. Genomics of cacao is discussed in Trends in Plant A discussion of the German National Ethics Council is
Sciences 8 (2003), 561-3. On the environmental genome BIOforum Europe 5 (Sept. 2003), 240-1. They have recently
shotgun sequencing of the Sargasso sea, Science 304 (2004), released a report on ethics of biobanks, and an English
58-60, 66-74. On human chromosome 13 sequence, Nature 428 summary is available (www.ethikrat.org). Papers on bioethics
(2004), 522-35. committees and democracy are in Bioethics 17 (2003), 301-68.
A study of the way language and distance isolate persons An introduction to the New Zealand Bioethics Council is in
genetically in Belgium is Annals Hum. Gen. 68 (2003), 1-16. New Zealand Bioethics J. 5 (2004), 13-5. More information is
The number of SNPs loci for detecting population structure is on their web site, www.bioethics.go.nz. A new newsletter is
between 65-100 independent loci, Human Heredity 55 (2003), being produced by the European Group of Ethics in Science
37-45. and New Technologies to the European Commission, called
"Ethically Speaking", since Feb 2003
General Medical Ethics (http://europa.eu.int/comm./European_group_ethics).
Papers on gender in India and religion are in Dharma The UK may make an ethical code for scientists working
Deepaka 7 (2003), 45-68. A study of books and journals on with potentially dangerous research that could be misused by
medical ethics in the Turkish republic period is Turkish J. terrorists, Lancet 362 (2003), 1634. There has been widespread
Medical Ethics 4 (2003), 240-5. Empirical bioethics is criticism of the US broadcast of the videotape of the
discussed in Health Care Analysis 11 (2003), 3-13. Papers on medical exam of Saddam Hussein, BMJ 328 (10 Jan. 2004).
ethics in indigenous health research are discussed in Monash
Bioethics Review 22 (Oct. 2003), 8-44. Scientific Ethics
Obligations of researchers to subjects for clinical care is The conflicts of interests of research ethics committees are
discussed in HCR 34 (Jan. 2004), 25-33. Divergent standards discussed in BME 191 (2004), 13-7. On conflicts of interest,
for consent in research are reviewed in BME 194 (2004), 13-21. NEJM 350 (2004), 327-32; BMJ 328 (2004), 742-3; Science
The information materials are also often difficult to read for 303 (2004), 603-4, 1447, 1749; JME 30 (2004), 1-52; Nature
participants, BME 192 (2004), 13-6. The guidelines of the 428 (2004), 589; JAMA 290 (2003), 2521; Lancet 363 (2004),
Swiss Academy of Medical Sciences on research on prisoners 380; NatMed. 10 (2004), 16.
are in BME 192 (2004), 7-11. A series of papers from a Medical journals have conflicts of interest in the publication
conference on Placebos: Ethics and Health Care Research are of book reviews, Science and Engineering Ethics 9 (2003),
in Science and Engineering Ethics 10 (2004), 1-197. Papers on 471-82. Peer review is discussed in BMJ 328 (2004), 657-8,
ethics committees include New Zealand Bioethics J. 4 (2003), 673-5, 658; NEJM 350 (2004), 103-4; Nature 427 (2004), 196;
8-15. Science 303 (2004), 1945. A call for medical editors to accept
The role of Japanese NGOs and the Hermit Crabs Home an ethical code is made in Nature 428 (2004), 5; NS (6 March
mental health project is Nursing Ethics 11 (2004), 203-4. 2004), 11. The US policy on editing papers from certain
A discussion of human dignity is in CQHE 13 (2004), 7-14. countries is being relaxed after much criticism, Science 303
(2004), 1742; Nature 427 (2004), 663; BMJ 328 (2004), 543;
Law & Medical Ethics NatMed. 10 (2004), 107. Plagiarism is discussed in Nature 427
European researchers have signed an Internet petition (2004), 1, 3, 666, 777; and fraud in Nature 427 (2004), 393.
calling for changes in the proposed EU rules on patient trials, Authorship is discussed in Nature 426 (2003), 602.
mainly against the extra paperwork, Nature 427 (2004), 276. In general on improving scientific ethics, BMJ 327 (2003),
On Canadian Medical Law a book review is CMAJ 169 1436-9, 328 (2004), 66, 187; MJA 180 (2004), 149-51; Nature
(2003), 447. The principle of disclosure in regulatory science is 427 (2004), 1, 381; Science 303 (2004), 298, 606. Open access
76 Eubios Journal of Asian and International Bioethics 14 (March 2004)

to research is important for improving quality of research, Health Costs


Lancet 362 (2003), 1510, 1575-7; Science 303 (2004), 1467, The ethics of health care for illegal immigrants is an issue
1777-8. facing many countries, HCR 34 (Jan. 2004), 34-41; Lancet 362
(2003), 2019-20. Human rights and the poor are discussed in
Euthanasia & Terminal Care NEJM 350 (2004), 737; BMJ 327 (2003), 1232; Lancet 362
A paper in Italian on palliative care is in Bioetica e Cultura (2003), 1591. Human rights and Australian international policy
12 (No. 2, 2003), 225-32. A paper on the regulatory is discussed in MJA 180 (2004), 163-5. On the constitutional
frameworks for long term restraints among the elderly, Health obligations in South Africa to treat using antiretroviral
Law Review 12 (2003), 22-8. On palliative care, BMJ 328 medicines, Health Law Review 12 (2003), 9-15.
(2004), 725; MJA 180 (2004), 207-8; Lancet 362 (2003), 1812- A report on US health disparities is Science 303 (2004),
3; JAMA 290 (2003), 2485. A study on the effects of 451. Futility is discussed in Nursing Ethics 11 (2004), 77-83.
bereavement on family caregivers of persons with dementia is
in NEJM 349 (2003), 1936-42; 350 (2004), 733-4. Internet
Artificial hydration for PVS patients is discussed in
National Catholic Bioethics Quarterly 3 (2003), 719-30; Lancet The Hellenic Republic (Greece) National Bioethics
362 (2003), 1465. On withdrawal of life-sustaining treatment, Commission has a book summarizing their English decisions,
Bioethics Outlook 14 (June 2003), 1-7; NEJM 349 (2003), and also a web site: www.bioethics.gr
2565-7. Canadian law and advance directives is discussed in J.
Law & Med. 11 (Aug. 2003), 59-73. A study of the impact of Prepared by Darryl Macer
living wills in Japan is JME 29 (2003), 248-52. On advance
care planning, NEJM 350 (2004), 7-8. Finnish nurses and Human Behaviourome Project
physicians views on end of life are in Nursing Ethics 11 (2004), There is a very active discussion on the Internet listserve.
165-78. On ageism in science, Science and Engineering Ethics
9 (2003), 445-52. Cultural issues in suicide are discussed in
There wil lalso be a series of appers presented at
NEJM 349 (2003), 2276-8. On refusal by patients of foods and TRT9/ABC5 and further papers appearing in a online
fluids, NEJM 349 (2003), 1777-8. book form soon. 9 methods working groups are working,
A Council of Europe ruling on euthanasia and assisted see the listserve. All Emails and files are open for
dying is in BME 192 (2004), 3-4. End of life practices in viewing at: http://groups.yahoo.com/group/behaviourome
Europe are discussed in JAMA 290 (2003), 2938-9. A survey of Contact: Darryl Macer.
ethical issues experienced by nursing in caring for elderly
persons is Nursing Ethics 11 (2004), 150-64. Choices by older IAB Genetics & Bioethics Network: On-line
persons in the UK is discussed in BMJ 328 (2004), 4-5; Nature The complete address list is updated on the Internet. Send all
428 (2004), 116-8. changes to Darryl Macer.

Organ Transplants & Brain Death Bindu Dey


Pharmacogenomic analysis can optimize the dose for drugs Director, Department of Biotechnology
taken for immunosuppression among organ recipients, Amer. J. Ministry of Science and Technology
Pharmacogenomics 2 (2002), 291-301. On the kidney trade in Government of India
Block 2,CGO Complex, Lodi Road, New Delhi
India, Indian J. Medical Ethics 1 (April 2004), 36-7. In general
India
on the organ trade, BMJ 327 (2003), 1009. The use of children Email-bindu@dbt.nic.in
as organ donors is discussed in papers in CQHE 13 (Spring Topics of interest- Health economics and Ethics; Biopharmaceutical
2004), 117-69. Matching kidneys by HLA type is reviewed in industry and Bioethics
NEJM 350 (2004), 545-51. An estimate of the number of
potential organ donors in USA is made in NEJM 349 (2003),
2073-5. Ethics of surrogate consent for living organ donation
are discussed in JAMA 291 (2004), 728, 732-5. Living liver
donation is discussed in BMJ 327 (2003), 1287.
A discussion of the UK Human Tissue Bill is BME 194
(2004), 22-4; BMJ 328 (2004), 533-4. Teaching autopsies are
fading in the UK, BMJ 328 (2004), 165-7. Respect for the dead
is discussed in Ethics 114 (2003), 38-59. The text of the UK
Medical Research Council Interim guidance on ethics of
research involving human material derived from the nervous
system is in BME 193 (2004), 7-11. Tissue typing for bone
marrow transplants to children are discussed in Monash
Bioethics Review 22 (Oct. 2003), 45-55. Research to regenerate
spinal cord is reported in NatBio 22 (2004), 297-305. On
development of an adaptive immune system in cord blood cell
transplanted mice, Science 304 (2004), 104-7.
On xenotransplantation, Politics & the Life Sciences 19
(2000), 247-60; Health Law J. 10 (2002), 31-75.
The artificial heart is discussed in NEJM 350 (2004), 542-3.
Cochlear implants are discussed in BMJ 328 (2004), 420; FDA
Consumer (Nov 2003), 35.
Eubios Journal of Asian and International Bioethics 14 (March 2004) 77

Dr Hans-Martin Sass
ABA Membership Zentrum Medizinische Ethik
Persons who want to confirm their membership of the ABA Ruhr Universitaet
must send their completed membership form and fees to the Postfach 102148
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Membership fees are payable from November, 2002, at the
Professor Aruna Sivakami
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A bioethics conference calendar website is:
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The following members are to add to the list of members written 2004, University of NSW, Sydney, Australia. Contact:
in the January 2004 issue of EJAIB (see total list on-line) as of 15 paul.mcneill@unsw.edu.au Website linked through IAB site:
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Contact:m Email eacept@horizon-travel.pl, www.eacpt.pl
Dr. Akira Akabayashi Sixth Asian Bioethics Conference, 23-25 November, 2005,
School of Public Health
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Email: to_bauer@gmx.net Prof. Darryl Macer
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Dr.Raúl Garza Garza Tsukuba Science City 305-8572, JAPAN
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Fr.Ignacimuthu,s.j.
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The Jerusalem Centre for Ethics


Mishkenot Sha'ananim
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Email: gilad@mishkenot.org.il

Dra. Martha Marcela Rodriguez Alanis


Clinica Hidalgo, Hidalgo 2428 Pte. Obispado,
Monterrey Nuevo Leon, Mexico C.P. 64600
Email: marcela_rdza@hotmail.com
78 Eubios Journal of Asian and International Bioethics 14 (March 2004)

EJAIB Editor: Darryl Macer


Associate Editors EJAIB - Aims:
Jayapaul Azariah (All India Bioethics Association, India), 1. EJAIB is the official journal of the Asian Bioethics
Frank Leavitt (Ben-Gurion Univ., Beer Sheva, Israel), Association (ABA) and the IUBS Bioethics Program.
Masahiro Morioka (Osaka Prefectural University, Japan). 2. To review and update news and trends in bioethics from
around the world (about 1000 papers each issue). Bioethics is
Managing Editor: Nobuko Yasuhara Macer
broadly defined as life ethics, including both medical and
Editorial Assistants: Baoqi Su environmental ethics, and environmental, ethical, legal and
Editorial Board: Akira Akabayashi (Japan), Sahin social issues arising from biotechnology.
Aksoy (Turkey), Angeles Tan Alora (Philippines), 3. To pay particular attention to issues raised by genetic and
Atsushi Asai (Japan), Alireza Bagheri (Iran), Gerhold reproductive technology, and other news for the International
Becker (Hong Kong), Hasna Begum (Bangladesh), Association of Bioethics Genetics Network. To publish letters
Minakshi Bhardwaj (UK), Christian Byk (IALES; on such topics, promoting international debate.
France), Ken Daniels (New Zealand), Leonardo de Castro 4. To publish research papers, and relevant news, and letters, on
(The Philippines), Ole Doering (Germany), Norio Fujiki topics within Asian Bioethics, promoting research in bioethics
(MURS Japan), Dena Hsin (Taiwan), Rihito Kimura in the Asian region, and contributing to the interchange of ideas
within and between Asia and global international bioethics.
(Japan), Abby Lippman (Canada), Margaret Lock
Asia is defined for the general purposes of this journal as the
(Canada), H. Ahmad Ludjito (Indonesia), V. Manickavel geographical area, including the Far East, China, South East
(Nepal), Anwar Nasim (Pakistan), Mary Ann Chen Ng, Asia, Oceania, the Indian subcontinent, the Islamic world and
(Philippines), Jin-Bao Nie (China, New Zealand), Pinit Israel.
Ratanakul (Thailand), Qiu Ren Zong (China), Hyakudai 5. To promote scientific responsibility, in coordination with
Sakamoto (Japan), Sang-yong Song (Korea); Noritoshi MURS Japan (Universal Movement for Scientific
Tanida (Japan), A.K. Tharien (India), Yanguang Wang Responsibility); and the International Union of Biological
(China), Daniel Wikler (USA), Michael Yesley (USA), Sciences (IUBS) Bioethics Program.
Jeong Ro Yoon (South Korea).
Eubios Journal of Asian and International Bioethics 14 (March 2004) 79

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Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City, 305-8572 JAPAN

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