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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
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)
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 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)
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
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Amdur, R.J. (2000). Improving the protection of human research It is no doubt that many people who considered the case
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Anonymous (1996). Research ethics and the medical profession: report
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1544. supported Mrs. Zheng. In another 47 student class, 26 were for
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retention and use of human organs and tissue from post-mortem husband’s right. The main reason against is from the viewpoint
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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.
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The issue of “whether the death row criminal ” has a right to
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National Bioethics Advisory Commission. (2001). Ethical and policy technology. Before, people couldn’t raise such a question or had
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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
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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
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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Yöntemleri.(Research Techniques and Analysis Methods). Dokuz the terminal patient and his/her family though, experimental
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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)
(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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62 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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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
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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;
Fluorescent enhancement of signaling in mantis shrimp is 22 (2004), 269-70; Science 303 (2004), 1142; NS (28 Feb.
reported in Science 303 (2004), 51. A description of the 2004), 44-7. On the ethics of technology, a book review of
Drosophila genome and a stock center for genetic variant flies Kass, LR., Life, Liberty and the Defense of Dignity is HCR 34
is in NatGen 36 (2004), 205, 207, 209, 211-2, 283-7, 288-92. A (Jan. 2004), 44-5. Technological mastery is discussed in
cooperative mouse house is being made in New York, NatMed. Science 303 (2004), 629-30; Nature 426 (2003),385-6.
10 (2004), 214. Changes in lifespan of Drosophila are possible Discussion of useful biotechnology for the global society is in
by inbreeding, Heredity 92 (2004), 275-81. Regulation of bone NatBio 21 (2003), 1434-6. On the age of DNA, Nature 426
mass in mice is by lipoxygenase gene Alox15, Science 303 (2003), 229-30; NatMed. 10 (2004), 15; Genome 46 (2003),
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viable, Science 302 (2003), 2087. Mice models of arthritis are & Illness 25 (2003), 644-61.
in Nature 426 (2003), 454-6; macular degeneration, NatMed. 9 Fears of nanotechnology are debated in Nature 426 (2003),
(2003), 1390-7; Huntington disease may be treated by 750; Economist (20 March 2004), 87-8. Methods to integrate
trehalose, NatMed. 10 (2004), 123-4, 148-54. ethics in the engineering curriculum are discussed in Science
and Engineering Ethics 9 (2003), 543-68. Religion and science
Designer Molecules with the teaching of creationism are discussed in BioScience 54
A backwards-moving myosin motor has been engineered, (2004), 3, 6-7; Science 303 (2004), 1268; Nature 428 (2004),
Nature 427 (2004), 558-61. A review of therapeutic peptides is 595.
TIBTECH 21 (2003), 556-62. An engineered pathway for The abuse of genetics in sport is discussed in Guardian (17
formation of disulfide bonds has been made, Science 303 Feb. 2004). New steroids are difficult to detect, SA (Feb. 2004),
(2004), 1185+. Protein engineering is discussed in SA (Jan. 12-3; NS (1 Nov. 2003), 3, 8-9; Lancet 362 (2003), 1466. There
2004), 22-3. Protein surgery is discussed in Nature 427 (2004), are also genetic tests for athletic performance, see
203-4. On RNAi, Nature Reviews Focus 5 (Dec. 2003), 4; www.gtg.com.au. Memory enhancing drugs are discussed in
Nature Reviews Genetics 5 (2004), 81. Use of a ribozyme to Science 304 (2004), 36-8. Cosmetic surgery is discussed in
Eubios Journal of Asian and International Bioethics 14 (March 2004) 67
BMJ 328 (2004), 590; Lancet 362 (2003), 1560; 363 (2004), Engineered Organisms, 2004
958. On breast implants, Lancet 363 (2004), 218, 379, 664. (http://books.nap.edu/openbook/0309090857/html/),
BioScience 54 (2004), 179. A report on the regulation of GM
Regulation & Field Trials of GMOs insects has encouraged the development of systems to regulate
A summary of accidents in GM containment is in GM insects, Pew Initiative on Food and Biotechnology, Bugs in
GeneWatch 17 (Jan. 2004), 8-9; see the System, 2004. (http://pewagbiotech.org/research/bugs/) For
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internationally, GeneWatch 17 (Jan. 2004), 12-4. The UK NatBio 22 (2004), 141. A report from the Keystone meeting
government approved use of commercial GM crops on 9 March held on GM insect vectors is in NatMed 10 (2004), 216. A
2004, Science 303 (2004), 1590. They claimed that GM crops review of how mobile elements drive evolution is Science 303
are beneficial for the environment, NS (6 Dec. 2003), 17. They (2004), 1626-32. On horizontal gene transfer, Nature 427
have approved the commercial growth of Bayer LL-Chardon (2004), 72-5. Lethal effects of biological insecticide Bt types
variety of fodder forage maize, NatBio 22 (2004), 371; Current on nontarget lepidoteransis claimed in Community and
Biology 14 (2004), R213-4. The UK debate on GMOs is Ecosystem Ecology (Dec 2003). On the genetics of insecticide
discussed in GeneWatch 16 (Nov. 2003), 10-12; Current resistance, Trends in Genetics 20 (2004), 163-70.
Biology 14 (2004), R889-90; Nature 428 (2004), 107; NS (13 A commentary on the Kay report to US Congress on the
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426 (2003), 488. Meanwhile, Europe has approved commercial USA has been set up, Science 303 (2004), 1595. The question
GM crops, Science 303 (2004), 448; Nature 427 (2004), 474. of coding behaviour for bioweapons is discussed in Science and
The present state of use of GM crops in the EU is in Acta Engineering Ethics 9 (2003), 453-70. The possibility of
Agric. Scand. Section B Suppl.1 (Dec. 2003), 14-18. The EU reemergence of smallpox if released by terrorists is discussed in
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Science 303 (2004), 448. A review of the EU GM pipeline is 601; NatBio 22 (2004), 375-8; Nature Reviews Genetics 5
Agrafood Biotech. 118 (25 Nov. 2003), 6-7. The agency (2004), 23-33. The US crackdown on scientists that research
responsible for GM trials in Germany is shifting from Ministry infectious diseases is causing many to dispose of their
for the Environment to the Federal Agency for Natural collections and stop research, NS (8 Nov. 2003), 3, 6-8; Science
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
A discussion of sustainable agriculture for developing the lab., NS (1 Nov. 2003), 6-7; (28 Feb. 2004), 6-7. It is unsure
countries is Biology International 45 (2003), 34-8. Debates how rapidly smallpox spreads, SA (Jan. 2004), 13-4. A book
over intensification of rice are in Nature 428 (2004), 360-1. A review on Japanese Germ Warfare is in Nature 427 (2004),
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Brazil has approved provisional measure No. 131
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Argentina and Brazil is in Ram's Horn 218 (Feb 2004), 1-4. stigmas in society in Japan for those with leprosy, Lancet 363
Papers on the GMO debate in Africa are African J. Biotech 2 (2004), 544. On leprosy genetics, Nature Reviews Genetics 5
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21. A list of GM crops in Africa is in NatBio 22 (2004), 260. the 19th century is NISTAD News 5 (Oct 2003), 34-6. A 19th
Monsanto is planning to export GM wheat to South Africa, century French physician's dilemma in smallpox is discussed in
Nature 427 (2004), 386-7. Bt cotton may be useful for small- JAMA 290 (2003), 2329-30. Also on smallpox, JAMA 290
scale producers in South Africa, NatBio 22 (2004), 379-80. (2003), 2610. Ebola vaccine has been tested in humans, JAMA
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consequences if they boycotted GM technology according to been multiple sources of Ebola outbreaks since 1995, Science
economic estimates, APBN 7 (No., 24, 2003), 75,77; Nature 303 (2004), 298-9. Ebola may be linked to decline of some
428 (2004), 594. The number of chronically hungry people is wildlife also, Science 303 (2004), 387-90.
increasing about 5 million a year, BMJ 327 (2003), 1303. There has been renewed debate on dangers of MMR
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soon, NatBio 22 (2004), 133. The transgenic GloFish is being GreenhealthWatch 7 (2003), 1-2; NEJM 350 (2004), 1380-2;
sold in California, though there is debate over its safety, Nature Nature 427 (2004), 765; 428 (2004), 1; BMJ 327 (2003), 1069;
426 (2003), 372, 596; NatBio 22 (2004), 379; NS (20 Dec 328 (2004), 773; Lancet 363 (2004), 567-9. The authors of a
2003), 24. The mixing of cultivated plants and wild relatives is paper suggesting a link have withdrawn their paper, Lancet
discussed in Nature 427 (2004), 395-6. There are still debates 363 (2004), 750; Nature 428 (2004), 112; NS (13 March 2004),
over defining GM, Science 303 (2004), 1765-71; Nature 426 4. There were concerns about links of the researcher who
(2003), 495. On academic freedom and GM views, Nature 426 claimed a link being also involved in a court case on the risks,
(2003), 591. BMJ 328 (2004), 483. Italy and UK have low MMR vaccine
A report on the ways to confine GMOs is US National uptake rates, BMJ 327 (2003), 1124. The question of whether
Research Council, Biological Confinement of Genetically measles can be globally eradicated is discussed in Bulletin
68 Eubios Journal of Asian and International Bioethics 14 (March 2004)
WHO 82 (2004), 134-8. Japan is funding efforts to make a new may spread in the body, NatMed. 9 (2003), 1463-4; Lancet 363
recombinant vaccine to provide protection against 4 diseases, (2004), 411, 422-8. Wildgame feasts may also be linked to
NatMed. 9 (2003), 1337. A study has found no link between CJD, CMAJ 169 (2003), 443. Japan has now 11 cases of BSE-
HiB type 1 vaccination and type 1 diabetes, NEJM 350 (2004), infected cows, and may have found a new strain, NatMed. 9
1398-404. A vaccine that used to used, has health affects, (2003), 1442.
inactivated intranasal influenza vaccine increases risk of Bell's A paper on ethics and SARS is Singer, PA. Et al. "Ethics
palsy, NEJM 350 (2004), 896-903. and SARS: lessons from Toronto", BMJ 327 (2003), 1342-4;
The additives to vaccines do not appear to pose any risks to and on public health control, Pang, X. et al. "Evaluation of
children, Lancet 362 (2003), 1987; SA (March 2004), 8-9. On control measures implemented in the Severe Acute Respiratory
the safety of whole virus for influenza vaccine, Lancet 362 Syndrome outbreak in Beijing, 2003", JAMA 290 (2003), 3215-
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flu virus has been identified, Science 303 (2004), 1787-8, 1866- reported in Genome Research 14 (2004), 398-405; NEJM 349
70; NEJM 350 (2004), 522-4; BMJ 328 (2004), 353, 368; see (2003), 2468-70; see also, JAMA 290 (2003), 2533-4. During
also Science 302 (2003), 1519-22. Studies have found that flu the SARS epidemic the virus evolved, Science 303 (2004),
infections may actually enhance the development of asthma and 1666-9; NEJM 349 (2003), 1875-6; Lancet 362 (2003), 1807-8;
allergic responses, contrary to the hygiene hypothesis, NatMed. 363 (2004), 99-104. The duty to treat and SARS is discussed in
10 (2004), 232-4. Influenza vaccine coverage in Japan is HCR 34 (Jan. 2004), 4; CMAJ 169 (2003), 141. A paper on
reported in Lancet 362 (2003), 1767. Methods for delivering SARS and comparisons to lepers is in Croatian Medical J. 44
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The prospects for eradication of polio are discussed in outbreaks is discussed in Science 303 (2004), 1605-6.
Science 303 (2004), 1960-8; Lancet 363 (2004), 93, 215; Information on SARS in Japan is reported in Lancet 363
Bulletin WHO 82 (2004), 1-70; NatMed. 9 (2003), 1454. There (2004), 571-2.
have been problems in polio vaccination in Nigeria, NEJM 350 There were only a few 2004 cases of SARS, Bulletin WHO
(2004), 645-6; BMJ 328 (2004), 485; Lancet 363 (2004), 709. 82 (2004), 152-3; Nature 427 (2004), 6-7; BMJ 328 (2004), 65;
Atherosclerosis may have infection-induced involvement of NS (10 Jan. 2004), 6. This was despite many measures to
mitochondrial chaperonins, Lancet 362 (2003), 1949. The use prepare for another outbreak, Lancet 362 (2003), 1632-3; 363
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2353-6. 87, 89; NEJM 349 (2003), 2381-2; Current Biology 14 (2004),
Asian bird flu epidemic has had ,major economic R91-3; CMAJ 169 (2003), 285-92, 299-200; JAMA 290 (2003),
consequences and led to the sacrifice of many chickens across 2934; 291 (2004), 1313; NS (20 Dec 2003), 15. There have
infected countries, Science 303 (2004), 447; BMJ 328 (2004), been two reported lab accidents with SARSs, Science 303
243; Nature 427 (2004), 573; NS (31 Jan. 2004), 10-1; (27 (2004), 26. A genetic susceptibility to SARS has been
March 2004), 6-7. There were also threats to humans in some suggested, NatMed. 9 (2003), 1335. SARS vaccines are
cases, Hien, TT. Et al., "Avian influenza A (H5N1) in 10 discussed in Science 303 (2004), 944-6; Nature 427 (2004),
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(2004), 238-9, 243, 308; JAMA 291 (2004), 1429-30. There is a presence of antibodies in patients suggests repeated SARS
large market for animal biotechnology products, NatBio 22 infections, Nature 427 (2004), 185; NS (24 Jan. 2004), 15.
(2004), 251. However patent concerns led to delays over Border screening for SARS is still in effect in several countries,
Vietnam's use of the vaccine, NS (25 Jan. 2004), 8. In general MJA 180 (2004), 220-3; NatMed. 9 (2003), 1441. It is possible
on diseases like avian flu and SARS which cross species SARS transmission may occur on aircraft, NEJM 349 (2003),
boundaries, NEJM 350 (2004), 1171-2; Science 303 (2004), 2416-22.
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CMAJ 169 (2003), 698; Nature 427 (2004), 274, 472-3; Lancet ethics of evaluating a new treatment for melioidosis is
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The first case of a BSE-infected cow in USA led to bans on (2004), 1535-8. African labs are include din the tsetse-fly
beef imports from USA for sometime in some countries, NEJM genome project, Nature 427 (2004), 384. On emerging
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.
little risk to the public, JAMA 291 (2004), 543-9. In general on Badgers are being killed to attempt to restrict TB in UK
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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of Lyodera, MJA 180 (2004), 177-81. A possibility of a drug to since last year, Lancet 363 (2004), 956. Sustainable
fight CJD has been raised, Nature 426 (2003), 487; BMJ 328 schistosomiasis control is discussed in Lancet 362 (2003),
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Stable SNPs have been reported in malaria genes in process for AIDS clinical trials is described in Nursing Ethics
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in Nature 427 (2004), 690-1. Ethiopia may face 15 million Screening of women with high risk types of papillomavirus
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years found that insecticide-treated curtains reduced child The engineering of plants for phytoremediation has been
mortality in Burkina Faso, Bulletin WHO 82 (2004), 84, 85-91. progressed through the concept of vacuolar
A paper on fear of mosquitoes in USA is Herrington, JE., "Pre- compartmentalization, Trends in Plant Science 9 (2004), 7-9.
West Nile Virus Outbreak: Perceptions and practices to prevent Molecular markers for plant bioremediation are available in
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of US cases of West Nile infections is Lancet 362 (2003), 1870. is Science 302 (2003), 2082-6. Planning for removal of oil from
A book review of For Love of Insects is Nature 428 (2004), a sunken tanker is discussed in SA (Jan. 2004), 18. Restoration
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
BMJ 327 (2003), 1177-8; Lancet 362 (2003), 1554-5; Science Environmental Issues
302 (2003), 1488; JAMA 290 (2003), 2976-84; NatMed. 10 On the ozone hole, Nature 427 (2004), 289-91. Genetic
(2004), 6. Antibiotic resistance in food is a problem also, differences in glutathione S- transferase enzymes alter the
BIOforum Europe 5 (Sept. 2003), 266-7. Links between sensitivity to sunburn, Amer. J. Pharmacogenomics 2 (2002),
antibiotics and breast cancer are debated in JAMA 291 (2004), 147-54. Tanning is dangerous, FDA Consumer (Nov. 2003),
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1726-7. The possibility of using predatory bacteria for Also on health impact of air pollution, NEJM 350 (2004), 834-
antimicrobial strategies is discussed in JAMA 291 (2004), 1188- 5. A summary of illnesses in USA from chemical agents is
9. JAMA 290 (2003), 2247-8; American Scientist 92 (Jan. 2004),
38-45. Chemicals alter reproductive health also, BMJ 328
AIDS & Sexually Transmitted Diseases (2004), 447-51. Estrogen may disrupt nitrogen fixation, Science
The question of compulsory screening of immigrants for 303 (2004), 950; EST 37 (2003), 5471-8.
HIV and TB is raised in BMJ 328 (2004), 298-300. Attitudes A paper on ethics is Leopold, AC., "Living with the land
towards premarital HIV testing in Malawi is reported in ethic", BioScience 54 (2004), 149-54. The need for clean water
Croatian Medical J. 45 (2004), 84-7. A report from prenatal is growing, BMJ 327 (2003), 1416-8; MJA 180 (2004), 260-1.
HIV testing in Georgia is in JAMA 291 (2004), 1061-2. In The environmental effects of NAFTA are discussed in
general on HIV testing, Economist (28 Feb. 2004), 84. Environment 46 (March 2004), 26-41. Noise pollution is
Papers on HIV, AIDS, sexual and reproductive health from discussed in NS (22 Nov. 2003), 26-7; (21 Feb. 2004), 26-9;
different countries are in Reproductive Health Matters 11 (Nov Pepper, CS. Et al. "A review of the effects of aircraft noise on
2003), 6-198. Papers on HIV and use of ARTs are in JME 29 wildlife and humans, current control mechanisms, and the need
(2003), 313-29. WHO has been accused of backing campaigns for further study", Environmental Management 32 (2003), 418-
with dirty needles, NS (6 Dec. 2003), 5, 8-9. WHO policy is 32.
70 Eubios Journal of Asian and International Bioethics 14 (March 2004)
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
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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.
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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)
Dr Hans-Martin Sass
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