Ethics in Public Health, Health

Care, Health Research and the

Biomedical Sciences

TH Tulchinsky MD MPH
Braun School Public Health
16 November 2010
 Ancient Origins of PH
Biblical Principals
Pikuah nefesh - sanctity of human life
Tikun olam – Biblical - repair the world
Ancient India and China - sanitation
Ancient Greece
Hippocratic oath - do no harm
Healthy body-healthy mind
City states
Religion – Charity, after-life
2
 Medieval
The Church - Religious institutions, relieve
suffering, care of the poor
Aristocracy – noblesse oblige
Universities – royal charters
Cities – royal charters, municipal government
sanitation, hospitals
Guilds – mutual benefit “friendly” societies
Leprosy
Pandemics - undefined
The Plague 3
Modern Origins of Public Health Ethics
Miasma and germ theories
Social hygiene
Scientific and PH advances during 19th-20th centuries
Government responsibility –local, state and national
Collective bargaining for health benefits
Tragic distortions of social hygiene – eugenics, genocide
Human rights – Nuremberg, Tuskegee, Helsinki
Universal right to health care (Health for All)
Self responsibility (lifestyle) in health
Advancing technology and rising costs
Public awareness and expectations
Pragmatism and science
4
 Ten Achievements of Public Health of
the 20th Century
1. Control of infectious disease
2. Vaccination
3. Motor vehicle safety
4. Safer workplaces
5. Decline in deaths coronary heart disease, strokes
6. Safer and healthier foods
7. Healthier mothers and babies
8. Family planning
9. Fluoridation of drinking water
10. Recognition of tobacco as a health hazard

MMWR, 1999 5
 Ethics in Epidemiology
Ethics is a branch of philosophy that deals with
distinctions between right and wrong – with the
moral consequences of human actions.
The ethical principles that arise in epidemiologic
practice and research include:
Informed consent
Confidentiality
Respect for human rights
Scientific integrity

Last JM [ed]. A Dictionary of Epidemiology. Fourth Edition. 2000

6
 Ethics, Values, and Mission Statements in
Epidemiology
• Core values - fundamental ethical and basic scientific values
support mission and purpose of the profession
• Epidemiologic mission is to acquire new scientific
information needed to maintain, enhance, and promote the
public's health
• Different opinions about core values
• Values in the profession may gradually evolve over time e.g.
euthanasia
• Core values in epidemiology are closely related to core
values in the broader field of public health.
• "Values define us as a group of public health professionals;
values drew many of us into public health”.

Coughlin SS. Epidemiologic Review. 2000;22:169-175 7

 Moral Reasoning as Guide for Action

• Mandatory and voluntary

• Benefits – for society and individuals
• Do no harm - balance potential good and harm
• Action vs. non action
• Autonomy - right of self determination
• Justice and equity
• Case based approach
• Design and conduct of research
• Application of knowledge
• Conflict of interests – disclosure
• Autonomy - informed consent, confidentiality
• Screening
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Coughlin S. Emerging Themes in Epidemiology, 2006
 Ethical Issues in PH
Routinely in public health, scientific considerations blend
with political and ethical conflicts, and questions of
autonomy, individual rights, coercion, justice,
community, the common good, the norms of research,
and multi-cultural values are central.
In public health today several different types of political
and moral theory overlap, converge, and contend with
one another, including libertarian liberalism, egalitarian
liberalism, utilitarianism, human rights frameworks,
and communitarianism.
Ethics and Public Health:
http://www.asph.org/UserFiles/E Model Curriculum, ASPH,
thicsCurriculum.pdf 9
2003
 New Public Health:
Individual and Population Health

Individual Health Population Health

Bioethics = human rights, Public health = utilitarian,

civil liberties and paternalistic, social and legal
individual autonomy responsibility to protect the
approach, medicalized public health, community
system, confidentiality, orientation, accountability,
privacy, universal, governmental
personalized responsibility
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 Ethics in PH
• Moral imperative of PH to ensure and protect the
health of the population and the individual
• Ethical foundations traditionally implicit in PH
• The right to health
• Responsibility fro population health
• Renewed awareness of and accountability
• Conflict between individual and community rights
• Effects of doing or not doing public health
interventions or “best practices”
• New issues all the time – diasters, genocide
11
 When and When Not to Act

• Public (community) right to protection and best

available standards
• Dangers/costs of not acting exceed those of acting
• Judgment, experience, evidence, ethics
• Experience of Good Public Health Practice (GPHP)
• Threats of preventable mortality or risk factors
• Public right to know
• Individual rights
• Balance of contradictions
• Accountability, transparency
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 Why Study Ethics in PH

• Many issues of conflict between good of the

individual and good of society
• Immunization, chlorination, fluoridation
• Food fortification
• HIV/AIDs, MDRTB, DOTs vs. DOTS Plus
• Aging and chronic diseases
• Genetically modified foods
• Technology and resource allocation
• Stem cell research
• The Case-for-Action
13
 Basic Questions
• Does society’s responsibilities = paternalism?
• Does freedom of individual = rejection of
responsibility of the state in health?
• Do we need informed consent for all PH
interventions?
• Do individual rights over-ride social responsibility?
E.g. AIDS contact tracing
• “Precautionary Principle” = must prove zero risk of
an new medication or PH intervention?
• Equity in health?
• Adequacy of funding and its allocation?
14
 Old-New Battles
• UK Variolists oppose vaccination vs. smallpox C19th
• US Opposition to public health departments in 1920s
• UK GPs oppose immunization with pertussis (1980s)
and MMR (2002+)
• AMA opposes to national health insurance 1920s +
• Civil rights vs. HIV control, 1980s US
• Anti-fluoridation 1950s to present
• Resistance to innovations e.g. MMR, Hib, Pap smear
• Anti-food fortification in Europe
• Anti-genetic engineering of food in Europe
15
 PH Ethical Issues
• Responsibility to protect society
• Responsibility to the individual
• Individual vs. community rights
• Government responsibility
• Corporate responsibility
• Right to health care
• Personal responsibility - self care
• Quality of care
• Freedom of choice
• Acting on evidence vs. not acting
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 PH Law and Ethics
• Gov’t obligation to protect health of the population
• Power of government to legislate, tax, spend,
regulate, punish
• Restriction of personal and business liberties e.g.
seat belt laws; smoking restrictions vs. human rights
• Economic, social impact of intervention vs. non-
intervention e.g. inequities of the poor and rural
• Laws enacted by legislative bodies
• Court decisions
• Public scrutiny
• Accountability 17
 Individual Rights and PH Ethical Issues
• Right to quality health services
• Provider responsibility to act for benefit of client
• Euthanasia - right to die
• Confidentiality – right to privacy
• Informed consent – right to know
• Birth control – religion vs. individual rights
• Supply and distribution of resources for health
• Incentives - disincentives
• Equity – social, ethnic, regional
• Social solidarity
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 Groups at Special Risk
• Women
• Children
• Civilians in war and terror situations
• Disaster victims
• Native peoples
• Minority groups
• Prisoners
• Military
• Refugees and internal migrants
• Mentally ill
• Rural vs. urban 19
 Individual and Community PH Ethics
Individual
• Personal hygiene
• Immunization
• Right to health care
• Self care
• Choice of provider
• Right to know
• Right to die
• Confidentiality
• Privacy
• Informed consent
• Patients Bill of Rights
Community
• Sanitation
• Herd immunity
• Universal access
• Education
• Gatekeeper function
• Mandatory reporting
• Case follow-up
• Resources for health
• Cost containment
• Equity
• Minority and special
groups
• High risk groups 20
 Public Health: “the Slippery Slope”
• 1920’s-1930’s: Eugenics movement
• 1930’s-1940’s: Mass sterilization of "defectives" in
United States and Sweden.
• 1930-1940’s: Mass murder of “defectives” in
Germany (750,000)
• 1940’s: Quarantining as pretext for ghettos by Nazis
• 1940s: Concentration camps, human experimentation
• 1940s: The Holocaust (6 million Jews and others)
• 1946 – Nuremberg Trials
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 Landmarks on Individual Rights: the
Biomedical Model
• Focus on individual informed consent
• Concern of exploitation and abuse of the individual
• Eugenics and forced sterilization
• Concentration camp medical “experiments” -
Nuremberg trials
• Helsinki declaration
• Tuskegee experiment
• Declaration of human rights
• Health for All
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 Nuremberg Code 1946
• Nazi experiments and industrialized murder
• Doctors found guilty and executed
• Set new conditions for research
• Subjects must have:
– Right to knowledge of purpose and effects of experiment
– Right of voluntary consent
– Right to end participation
• Scientist in charge responsible for:
– Scientific basis or validity of the hypothesis
– To terminate experiments likely to cause injury, disability,
death
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Universal Declaration of Human Rights,
1948

Article 25.
Everyone has the right to a standard of living adequate
for the health and well-being of himself and of his
family, including food, clothing, housing and medical
care and necessary social services etc.

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 Helsinki Declaration 1964
• World Medical Assembly 1964 to present
• Privacy and integrity of individual protected
• Adequate informed consent
• Research for valid scientific benefits
• Accepted scientific principles
• Benefits outweigh risks
• Publication
• Protect control group
• Individual well-being vs. needs of science and
society
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 Tuskegee Experiment
• Tuskegee, Mississippi
• Duration 1932-1972
• Conducted by US Public Health Service
• To observe the natural history of syphilis
• Group of black men
• Treatment with penicillin available (1942)
• Failed to provide information to subjects
• Unethical (possibly criminal) behavior
• New standards resulted
• Apology by President Clinton 1996
• Continues to influence sectors of US public in
response to public health initiatives
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 Health for All

• WHO definition of health, 1948

• Alma Ata, 1978 Health for All
• Health care as a universal human right
• Government responsibility
• Wide acceptance
• Important to help shift priorities
• Still unfulfilled
• Health targets
• Priorities and cost-benefit decisions
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 Changing Concepts of Disease
• 1960s – Ivan Illitch and McKeowan – medical care of
little value; health gains result of sanitary and
nutritional adavances
• 1970s – Marc Lalonde Health Field Concept: genetic,
environment (physical and social), lifestyle and
medical factors in health
• Evidence of risk factors for disease e.g. smoking, diet
exercise e.g. smoking and Framingham studies
• Blaming the victim vs. self responsibility?
• Health targets US Surgeon General and WHO
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 Government Law
Ethics

New Public Health

Public Inter
Opinion national
standards

Individual Population
Health Health
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 The New Public Health
• Sanitation, environment, infectious disease control
• Managing health systems and resources
• National target e.g. reduce stroke mortality
• Health promotion e.g. food fortification, smoking
restriction
• Health education e.g. nutrition, exercise, self care
• Personal preventive services e.g. hypertension, MI,
CHF, diabetes
• Clinical standards, guidelines e.g. AMI, diabetes
• Ambulatory and home care
• Long term care 30
 Tasks of the ASPHER Ethics
Working Group
• Develop overall ethical standards of ASPHER
EUPHA and member organizations
• Develop ethical standards for public health
practice
• Develop curricula for undergraduate, masters
and PhD level studies of PH
• Promote research and publication in ethical
issues in PH
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 Summary
• Government responsibility to legislate, tax, regulate
and enforce for the public health
• Protection and pro-active services for the weak, the
needy, for equity and social solidarity
• Ethical considerations
• Rights of society
• Rights of individuals
• Responsibility of individuals
• Informed consent for research
• Precaution vs. inertia
• Importance of New Public Health
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What would your mother tell
you to do? 33