Ethics in Public Health

1. Ethics in Public Health TH Tulchinsky MD MPH Braun School Public Health April 2004

2. Ancient and Medieval Origins of Ethical Standards in PH • Ancient • “Pikuah nefesh” - sanctity of human life • “Tikun olam” - repair the world • Hippocratic oath - do no harm • Greece – • Healthy body-healthy mind • City states • Religion – Charity, after-life • Medieval • Municipalities – sanitation • Guilds – mutual benefits societies

3. Modern Origins of Public Health Ethics Scientific advance in medicine and public health during 19th-20th centuries Government responsibility –local, state and national Collective bargaining for health benefitsUniversal right to health care (health for all)Self responsibility (lifestyle) in healthAdvancing technology and costs Public awareness and expectations

4. Ten Achievements of Public Health of the 20th Century • Control of infectious disease • Vaccination • Motor vehicle safety • Safer workplaces • Decline in deaths from coronary heart disease, strokes • Safer and healthier foods • Healthier mothers and babies • Family planning • Fluoridation of drinking water • Recognition of tobacco as a health hazard Source: 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. New Public Health:Individual and Population Health Population Health Public health = utilitarian, paternalistic, social responsibility, communitarian orientation Individual Health Bioethics = human rights, civil liberties and individual autonomy approach, medicalized system

7. 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? • Renewed awareness of conflict between individual rights and community rights • Effects of doing or not doing public health interventions or “best practices”

8. When and When Not to Act • Judgment, experience, evidence, ethics • Experience of Good Public Health Practice • Threat of preventable mortality or risk factor • When dangers/costs of not acting exceed those of acting • Public right to know • Public right to protection • Individual rights • Balance • Accountability, transparency

9. Why Study Ethics in PH • Many issues of conflict between good of the individual and good of society • Immunization, chlorination, fluoridation • HIV/AIDs, MDRTB, DOTs vs DOTS Plus • Aging and chronic diseases • Human Genome Project • Genetically modified foods • Technology and resource allocation • The Case-for-Action

10. Basic Questions • Dies society’s responsibilities = paternalism? • Does freedom of individual = hostility to the state in all it’s manifestations? • Do we need informed consent for all PH interventions? • Do individual rights over-ride social responsibility? E.g. AIDS contact tracing? • The “Precautionary principle” = must prove zero risk of intervention? • Equity in health? • Adequate funding and its allocation

11. 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 to present • Civil rights vs HIV control, 1980s US • Anti-fluoridationism 1950s to present • Anti-food fortification in Europe • Anti-genetic engineering of food in Europe

12. 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

13. 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 liberties e.g. seat belt laws or smoking restrictions vs. human rights • Economic and social impact of intervention vs. non-intervention • Laws enacted by legislative bodies and court decisions

14. Individual Rights and PH Ethical Issues • Right to quality health services • Provider responsibility to act for benefit of client • Euthenasia - 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

15. 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

16. 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 In

17. Public Health, Experimentation and “the Slippery Slope” • 1920’s-1930’s: Eugenics • 1930’s-1940’s: Mass sterilization of "defectives" in the USA and Sweden. • 1930-1940’s: Mass euthanasia of “defectives” in Germany • 1940’s: Quarantining epidemic disease as pretext for ghettos by Nazis • 1940s Concentration camp human experimentation • 1940s: The Holocaust

18. Eugenics: “America’s Dirty Little Secret” • Slavery and racism and slavery in America’s past. • 19th C eugenics movement founded • Oliver Wendell Holmes Jr.'s US Supreme Court decision of 1927, which affirmed Virginia's right to sterilize Carrie Buck, a supposedly "feebleminded" woman: • "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind." And referring to Buck's mother, who was also considered feebleminded, and her daughter, who it was assumed must be feebleminded, he concluded in words that have become infamous: "Three generations of imbeciles are enough."

19. Eugenics spreads to fertile territory By 1933, when the Nazi sterilization law are passed, there were about 20 states in America that already had sterilization laws. Hitler praises American eugenicist policies in 'Mein Kampf.' Paul Lombardo, Professor of bioethics and law, University of Virginia

20. Landmarks re Individual Rights: the Biomedical Model • Focus on individual informed consent • Concern of exploitation of the individual • Nuremberg trials • Helsinki declaration • Tuskegee experiment • Declaration of human rights • Health for All

21. Nuremberg Code 1946 • Nazi experiments on prisoners • Set new conditions for research • Subjects must have: • Knowledge • Right of voluntary consent • Ability to end participation • Scientist in charge responsible for: • Scientific basis or validity of the hypothesis • To terminate experiments likely to cause injury, disability, death

22. 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. Article 30. Nothing in this Declaration may be interpreted as implying .. person any right to engage in any activity or to perform any act aimed at the destruction of any of the rights and freedoms set forth herein

23. Helsinki Declaration 1964 • World Medical Assembly 1964 to 1996 • 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. those of science and society

24. Tuskegee Experiment • Tuskegee, Mississippi • Duration 1932-1972 • Conducted by US Public Health Service • Observe natural history of syphilis • 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

25. 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

26. Changing Concepts of Disease • 1960s – Illitch and McKeowan – medical care of little value, health gains result of nutritional gains • 1970s – Lalonde Health Field Concept = genetic, environment (physical and social), lifestyle and medical factors • 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

27. APHA 2002, Principles of the Ethical Practice of Public Health • Address fundamental causes of disease and requirements for health • Respect the rights of community residents • Advocate empowerment of the disenfranchised • Enhance the physical and social environment • Act within a timely manner • Promote collaboration and affiliations to build the public’s trust

28. NY Times, May 27, 2004 Oregon’s Death with Dignity Act A US federal appeals court upheld the only law in the nation authorizing doctors to help their terminally ill patients commit suicide. The decision, by a divided three-judge panel of the Court of Appeals in San Francisco, said the Justice Department did not have the power to punish the doctors involved. The majority rebuked US Attorney General John Ashcroft, saying he had overstepped his authority in trying to block enforcement of the state law. "The AG’s unilateral attempt to regulate general medical practices historically entrusted to state lawmakers …interferes with democratic debate about physician-assisted suicide and far exceeds … his authority under federal law. The US Justice Department could ask an 11-member panel of the Ninth Circuit to rehear the case or appeal to the US Supreme Court. The assisted-suicide law in Oregon is the product of a 1994 voter initiative. It allows adults with incurable diseases who are likely to die in six months to obtain lethal drugs from their doctors. The doctors may prescribe but not administer the drugs, and are granted immunity from liability. About 30 people a year have used the law to end their lives since it became effective in 1997, about one per thousand deaths in Oregon. The court was not deciding the morality or appropriateness of assisted suicide and gave no opinion on whether the practice is inconsistent with the public interest or constitutes illegitimate medical care. This case is simply about who gets to decide. State governments bear primary responsibility for evaluating physician-assisted suicide. In our concept of federalism, and state lawmakers, not the federal government, are primary regulators of professional medical conduct. "

29. Basics of Prevention • Primary prevention = prevent a disease from occurring • Secondary prevention = prevent complications from a disease • Tertiary prevention = restore and maintain maximum function

30. New Public Health Individual Health Population Health

31. The New Public Health • Managing health systems and resources • National target e.g. reduce stroke mortality • Health education e.g. nutrition, exercise, self care • Health promotion e.g. food fortification • Personal preventive services e.g. hypertension • Clinical standards eg. AMI, diabetes • Long Term Care e.g. prevention of 2nd MI, CHF

32. Summary • Government responsibility to legislate, tax, regulate and enforce for the public health • Protection of the weak, equity • Legal and ethical considerations • Rights of society • Rights of individuals • Responsibility of individuals • Informed consent for research • Precaution vs. inertia • Importance of New Public Health

33. Which is the Right Way?