What Makes Research Fair? Just Science in an Unjust World

1. What Makes Research Fair? Just Science in an Unjust World October 2009 Happy Anniversary Ethics Center! Celebrating 5 Years of Ethics and Public Involvement Northwestern University Center for Bioethics Science and Society Laurie Zoloth, Ph.D. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

2. Plan of Talk: Basic Research and Justice • Not a talk about details of policy • But why we need to think and plan for justice in basic science • A case to consider • Considering how to decide • A quick comment on unasked questions in health care reform Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

3. At NU, we teach and research questions of ethics and science: • What does it mean to be human? • What does it mean to be free? • What must I do about the suffering of others? • How ought I to live decently? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

4. Policy asks us to make moral choices based on these answers • Morality of our choices are based in core narratives: • The Good Samaritan • Rules for how to treat/love/care for your neighbor • All of this helps us reflect on rights and duties Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

5. The ethics of basic research assumes that science: • Often proceeds as if the only problem is permission • Often carried on in conditions of relative abundance • Deals with the problem of description as the goal Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

6. The “third”: a problem in philosophy and policy • What happens if there are a lot of others? • What if the Good Samaritan had several wounded travelers by the road? (Churchill, Larry, 996) • Who is the world made for? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

7. The Question of Justice • How does a society decide what is just? • In a world of scarcity, how ought a society justly distribute scarce goods and services? • In light of the particular and poignant crisis of health care what would be the language of such choices,--and should scientist have to worry about this? • How can state can be accountable for justice • How can an international community reflect on justice? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

8. Problems of Justice in Research Many difference issues call for “fairness”.

9. Who should test our ideas? • Many career lab rats get the lowdown on the trade through the website Just Another Lab Rat (www.jalr.org), created and maintained by Paul Clough, a professional volunteer. Clough estimates that there are about 10,000 volunteers in the US who can be considered professionals, in that they do three or four large studies per year and earn $20,000 or more.

10. Who should get access to our drugs?

12. Who can object to our intent? • Artificial life • Human embryos • Animal research • Dual use technologies

13. Why justice theory first? • Why not just let the market or the academic process decide scientific : • Goals • Process • Distribution Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

14. Because planning matters. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

15. Life boat #6, as seen from Carpathian Rescue Ship. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

16. Premise One • Scientific attention to a problem is one of humanity’s most precious social goods Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

17. Premise Two • The funding of science should be a public good—oversight , transparency, ownership and sharing are all enhanced by this. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

18. Premise Three • As a social good and not as a commodity, science is subject to a need for a fair context in which to proceed. • Both the process and the substance of the research needs to be fair • BUT! What do we mean by fair? Who gets into the lifeboat? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

19. Standard candidates for material principles of distribution • numerical equality • need • individual effort • social contribution • merit or desert • age Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

20. Theories come from material principles • Different theories of justice placed different emphasis on these material principles, • Can accept combinations of material principles • Understanding a particular theory of justice began by critically examining the theoretical justification of the selection of material principles Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

21. And from principles of liberal democracy—a quick review! • All liberal theories shared in common the presuppositions of the liberal tradition, • all rested on the assurance of the primacy of the individual the individual person, with liberty, rights, duties, and the ability to engage in voluntary consent, existed prior to the social contract itself. • the social contract that is entered into by rational free agents operating from an original position that was either historical or hypothetical, that created the liberal state Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

22. Libertarian theory—why it works! • liberty, private property, and entitlement. • the problem of ownership • the rights of each individual to own his or her own resources. • According to the classic Lockean theory, the labor power of the individual, his actual work, was "mixed" with the natural resources, land, and water to create wealth that the individual then owned. • The ownership of the harvested crops was brought into being by virtue of the individual's creation of this commodity where none existed before. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

23. Problems! • Are free first holdings really free? • What of physical or genetic injustice? • Does the end not really not matter---could one accumulate nearly all the resources if done fairly? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

24. Utilitarianism—why it works! • “All action is for the sake of some end, and rules of action, it seems natural to suppose, must take their whole character and color from the end to which they are subservient. . . . When we are engaged in a pursuit, a clear and precise conception of what we are pursuing would seem to be the first thing we need, instead of the last we are to look forward to” • John Stuart Mill Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

25. Based in Consequences • Greatest happiness for greatest number • pleasure and the freedom from pain, are the only things desirable as ends; and that all desirable things (which are as numerous in the utilitarian as in any other schemes) are desirable either for the pleasure inherent in themselves, or as a means to the promotion of pleasure and the prevention of pain. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

26. Not rights based • liberty was not a right unless it was justified by its utility to a society that was secure. • Claims of merit, claims of prior social contract, conflicting appeals, and material principles of justice were ultimately subjective and hence did not give a consistent account of justice. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

27. Problems! • Majority v minority • What is good? • Evil • Fate of individual Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

28. Contract Theory—why it works! • Contracts can be between states, or people and God, or citizens and governments, or between people • Rules and processes are fair, even if outcome is flawed. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

29. Kant—the rules most be universalizable • “nothing is left but the conformity of actions to universal law as such and this alone must serve the will as its principle. That is to say, I ought never to act except in such a way that I can also will that my maxim should become a universal law.” Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

30. Rawls: Social Contract Theory • Based on equality of shares as in John Rawls • “Each person possesses an inviolability founded on justice that even the welfare of society as a whole cannot override. • justice denies that the loss of freedom for some is made right by a greater good shared by others. • Therefore in a just society the liberties of equal citizenship are taken as settled; the rights secured by justice are not subject to political bargaining or to the calculus of social interests.” Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

31. First Principle: Each person is to have an equal right to the most extensive total system of equal basic liberties compatible with a similar system of liberty for all Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

32. Second Principle: social and economic inequalities are to be arranged so that they are both: • a. to the greatest benefit of the least advantaged, • b. attached to positions open to all under conditions of fair equality of opportunity • And you should not know your position Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

33. Problems! • Rawls was the author of affirmative action and the Great Society • Are there limits on how the long adjustments are needed? • You are not really behind a “veil of ignorance.” • What if the contract creates new injustices? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

34. Egalitarian Theories of Justice-why it works! • each of us had inescapable and essential rights and obligations toward one another that could not be ignored • rights, obligations, duties, and needs arose from something we shared as persons, • common to all • must be respected by all. • commitment to equality • Akin to faith idea of being God’s children • ability to make rational choices that honored this equality were at the heart of this theory of justice. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

35. First among these duties was the notion that justice was rooted in equality, an equality due on the basis • of shared human embodiment and • participation in a mutually consensual human society. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

36. A basic decent minimum. • This basic decent minimum was an assessment of a quantifiable human necessity • constituted the share to which all persons were entitled by virtue of their personhood alone • not because of merit or desert. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

37. All these theories share these qualities: • Must be applicable: Any theory, to be ultimately credible, must address certain social imperatives: cultural norms, economic limits, and the power of the state. • Rooted in mortality and rooted in scarcity • Theory for rational beings Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

38. All faced challenges in the late 20th century • Feminist in North America • Liberation Theology in Latin America • Post- Modernist in Europe • And in the 21st century—the challenge of increased scarcity and financial catastrophe. • But were the basis for many health care policies Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

39. Science proceeds largely with a libertarian argument: • 3 Classic lifeboat problems in all technological advances • First use will be risky and dangerous • Will quickly be available to a small elite • Will move from desire to need to entitlement Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

40. American policy is organic as opposed to systematic • Driven by new technology and innovation • Driven by marketplace • Driven by demographic changes/food/ transportation policy • Driven by history of triage in war and by history of labor relations. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

41. Life expectancy was limited in 1965 • Most Americans were insured, then retired and died two years later, at around 67 • But beta blockers, stents, cancer therapies, and lipid blockers changed that. • ICUs transplants and new small molecules drugs help too • Combination of expensive high tech and epiphanies about health extend expectation Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

42. Unions were stronger, and most American workers had coverage • But many forces coalesced to change this too: • Off shore production closed plants and industries • Rise of large employers who did not insure workers • Rise in immigration • Full time, able bodied, and young workers also were uninsured • Poor health creates “syndrome X” Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

43. World War II also drove health care • Wages were frozen, but labor was scarce: How to keep workers at Kaiser? GM? • Answer—pay a portion of pay raises as untaxed benefits • Kaiser had company doctorsHMO • Others paid for insurance instead of wages • Co-payment later introduced as health care cost rose Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

44. Or, you can fund low cost cardiac treatment centers in poor neighborhoods, with the goal of preventing obesity, stopping smoking. • Or you could fund research to create a pre-natal genetic test for this and see if there is a genetic pattern for cardiac disease and… Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

45. Controversial slide alert: • What theory of justice do you want? • Are we discussing the right question? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

46. We said yes to 4 things • 1. To a health care marketplace: big science, litigation and technology create medicine as a profit center. • 2. To abundant food, sweets, drinks, smoking and lack of exercise as a lifestyle for many. • 3. To paying for many untested and competing choices of therapy without a system of justice • 4. To a rising sense of entitlement, a search for youth , to avoiding a serious discussion of death, and the limits of medicine. Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

47. Are these ethical? • Could any be changed? • Does saying “yes” to universal access mean saying “no” to any of these things? • Is it fair to fund research on disease essential triggered by our culture? • How should we understand a rise in diseases of the 18th and 19th century? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

48. Statement of Problem • How can we set in place a fair and just system of access to the good ends of scientific research? • Using a fair and just process.. • And aiming for fair and just goals for humanity? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

49. When we live in an unjust world? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society

50. Some choices seem fairly easy • Setting up a system would include vaccinations, well-baby check up, annual physicals, mammograms, and pap smears. • But what about new technology? • How is new science incorporated into what we understand as basic? • What if it is more expensive, but better? Northwestern University Feinberg School of Medicine, Center for Bioethics, Science and Society