Biomedical Politics (1991) / Chapter Skim
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Conclusions
Conclusions
Pages 308-322
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From page 308... ...
Federalist Papers 10 Conflict and controversy about values occur in any society. Controversy over science and technology, however, entails unique clashes between expertise and ignorance, encompassing ideals about rationality and progress and challenging our traditional notions of legitimacy and authority.
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From page 309... ...
History and the development of social events such as the civil rights and women's movements have sensitized different groups and forever moved certain issues such as reproductive rights, environmental standards, and re
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From page 310... ...
When Alexis de Tocqueville first warned of the "tyranny of the majority," he could never have foreseen the impact of mass media and public opinion polls, which have forever altered our perceptions of the majority and minority in America. Today, more than ever, all views claim legitimacy, and the views that are able to mobilize votes have power.
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From page 311... ...
The fetal tissue case reminds us that advisory panels rarely have authority. Lack of authority may sometimes embolden panels to make recommendations that are intellectually and even spiritually sound, but politically untenable.
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From page 312... ...
These principles are illustrated in Rettig's account of the decision to provide reimbursement for ESRD, when the decision makers believed that national health insurance would soon be in place. Obviously, the problem with incrementalist approaches is that their result is public laws that are disjointed, incomplete, and sometimes contradictory.
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From page 313... ...
The fact that the Reagan administration was actively promoting deregulation of all industries was a convenient coincidence that helped facilitate the parallel track. In the genome case we see that, by chance, construction of the Keck telescope inadvertently but directly set in motion discussions that would lead to the human genome project, proving that momentous ideas can be born in unlikely places.
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From page 314... ...
In the fetal tissue case, Childress documents the concern, on the part of some panelists and key administration officials, that condoning the use of fetal tissue would set a precedent resulting in an increased demand for surgical abortions. At Asilomar, some scientists expressed concern about imposing a moratorium because of the lasting effect it might have on future decisions.
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From page 315... ...
The Gottschalk report was never seen by the members of Congress and their key staff in making the landmark ESRD decision. The deliberations of the fetal tissue panel were never widely distributed but instead summarized in single-column press coverage.
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From page 316... ...
In an age when bureaucracy seems to be unresponsive and at times unacceptably slow, the ddI case reminds us that we are all capable of remarkable shifts of attitudes. This was certainly true of the scientists and regulators involved in the decision about ddI who were able to forgo a strongly held position in favor of one they had bitterly opposed.
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From page 317... ...
For example, the RU486 case demonstrates the power of the antiabortion lobby in influencing the decisions of pharmaceutical executives. On the other hand, the human genome project, which is likely to lead to improved capabilities for prenatal diagnosis of genetic defects, was never targeted by groups concerned about termination of unwanted pregnancies.
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From page 318... ...
In the case of ddI and AIDS treatment, the gay community asked that individuals be allowed to determine their own acceptable risk and that scientific judgment take a back seat to personal choice. Decision makers could benefit from a greater understanding of how people perceive risk, which might also allow for more autonomy in decision making.
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From page 319... ...
At what point do decision makers allow costs to counterbalance effectiveness? The cases on ESRD and the human genome project demonstrate the role costs can play in a decision.
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From page 320... ...
Although the public increasingly intervenes in biomedical decision making, it is often through proxies. For example, citizens may call or write their elected officials (as well as vote for those who represent their interests)
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From page 321... ...
To achieve this balance, decision making must allow for interaction among the issue's key stakeholders in order to minimize serious cognitive or judgmental bias. Yet the democratic process requires rules for interaction, the basis for which is due process guarantees, hearings, and administrative law.
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From page 322... ...
One way of viewing the biomedical decision-making process is through a sort of existential paradigm, whereby no decision is exhaustively describable or understandable in scientific terms. The irreducible uniqueness of each situation deserves special consideration in analysis.
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