In Spare Parts , Renee Fox and Judith Swazey have updated us on their continued and lifelong study of the ethical, moral, social, and cultural processes of therapeutic innovation. As with their initial The Courage to Fail , they have remained with organ transplantation as their basic scientific model and have approached the subject from a sharply different angle than did William A. Nolen, MD, in his Spare Parts for the Human Body (Random House, 1971). In the nearly 20 years between publication of the two works by Fox and Swazey, their idealism has matured, as has their field of chosen study. Their "research physicians" have adapted to market forces as the field of transplantation exploded from the experimental kidney transplant (as discussed by Nolen) to broad acceptance of transplantation of the heart, liver, heart and lung, and more experimental segmented organ transplants, in efforts to save or prolong life. They do

Spare Parts: Organ Replacement in American Society

1. Rationalizing Politics The Rise of Social Regulation Science and Policymaking Expertise and Trust The Contingency of Knowledge The Reform Debate An Alternative Approach 2. Flawed Decisions Nitrites 2,4,5-T Love Canal Estimates of Occupational Cancer The Technocratic Response A Critical Counterpoint 3. Science for the People The Rationale for Public Science The "New" Expert Agency Scientific Advice and Open Government Judicial Review of Science Policy The Weakening of the Paradigm 4. Peer Review and Regulatory Science The Traditions of Peer Review Peer Review in Practice Instructive Failures Regulatory Science: Content and Context Implications for Regulatory Peer Review 5. EPA and the Science Advisory Board Early Political Challenges A New Cooperation Boundary Exercises SAB's Impact on Policy Conclusion 6. The Science and Policy of Clean Air CASAC and the NAAQS Process Science and Standards Redefining CASAC's Role The Carbon Monoxide Controversy CASAC's Effectiveness: Bridging Science and Policy 7. Advisers as Adversaries The Scientific Advisory Panel Implementing the Impossible Ethylene Dibromide Dicofol Alar A Fragmentation of Authority 8. FDA's Advisory Network The Scientific Evaluation of Drugs Expertise and Food Safety Advice and Decision 9. Coping with New Knowledge The Quest for Principled Risk Assessment Formaldehyde: An Uncertain Carcinogen Conclusion 10. Technocracy Revisited A Public-Private Partnership for Science Risk Assessment without Politics The Public Board of Inquiry Wider Applications 11. The Political Function of Good Science From Advice to Policy Acceptable Risk Scientific Advice as Legitimation: Negotiation and Boundary Work Defining "Good Science" Normative Implications Conclusion Notes Index

The fifth branch. Science advisers as policymakers

Developing countries deserve as much leeway to deal with their public-health crises as the United States has allowed itself.

Double Standards

Altruism, gift giving and reciprocity in organ donation: A review of cultural perspectives and challenges of the concepts

Background: There is an ongoing expert debate with regard to financial incentives in order to increase organ supply. However, there is a lacuna of empirical studies on whether citizens would actually support financial incentives for organ donation. Results: The average (passive) willingness to donate is 63.5% among medical students and 50.0% among students of economics (p = 0.001), while only 24.1% of the respondents were actually holding an organ donor card. 11.3% of students of economics had signed a donor card, however, the number is significantly higher among students of medicine (31.9%, p < 0.001). Women held donor cards significantly more often (28.6%) than men (19.4%, p = 0.004). The majority of students were against direct payments as incentives for deceased and living donations. Nevertheless, 37.5% of the respondents support the idea that the funeral expenses of deceased organ donors should be covered. Women voted significantly less often for the coverage of expenses than men (women 31.6%, men 44.0%, p = 0.003). The number of those in favor of allowing to sell one's organs for money (living organ donation) was highest among students of economics (p = 0.034). Conclusion: Despite a generally positive view on organ donation the respondents refuse to consent to commercialization, but are in favor of removing disincentives or are in favor of indirect models of reward.

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Impact of gender and professional education on attitudes towards financial incentives for organ donation: results of a survey among 755 students of medicine and economics in Germany

Summary


Waiting lists for organs have stimulated interest in the use of financial incentives for organ donation (FIs), but the literature does not contain an adequate overview of studies of public attitudes toward this mode of procurement. We conducted a literature review of international peer-reviewed research published between 2002 and 2012 on how members of the public position themselves toward FIs. We identified and analyzed 23 studies using MEDLINE, PsycINFO, Sociological Abstracts and cross-reference search. The search included whole organs, donation, quantitative and empirical qualitative social scientific studies on, public attitudes (excluding professionals and medical students). The review reveals a broad divergence of public opinions on financial incentives. However, quantitative studies showed a low overall level of acceptance of payment for organs in living donation (LD); only a slightly higher one for deceased donation (DD); and a general preference for alternative forms, such as removal of disincentives or expressions of social reciprocity. Across different national and methodological settings we observed a considerable preference of noncommercial forms. This does not preclude the opportunity to consider various types of acknowledgement of economic value given in return for the organ. This provides reason to shift the focus from incentives to reciprocity.

Public attitudes to financial incentive models for organs: a literature review suggests that it is time to shift the focus from 'financial incentives' to 'reciprocity'.

This article explores the interplay between cultural discourses, moral reasoning and silenced uses in the international exchange of Danish blood plasma Campaigns, policymakers, health professionals working in the blood banks – and even donors – consistently refer to ideals portraying blood as ‘beyond trade’ This stands in remarkable contrast to the fact that the donated plasma is sold to an international pharmaceutical company in consequence of rules of tender set by the European Union Donors are not aware of this, and when asked in hypothetical terms about trade, they strongly oppose it However, we find that available cultural discourses poorly capture the moral reasoning among many donors In fact, when informed about the existing forms of tender, plasma trade sounds like a good idea to most of them Furthermore, they are not particularly interested in information We argue that the silencing of trade is infusing the system with an unnecessary vulnerability that could easily be avoided with a different communication strategy towards donors To arrive at new and better strategies, however, one must move beyond the immediate words and reactions of donors contemplating trade and seek to understand their reasoning and valuations This move also allows us theoretical reorientation with respect to studies of the gift/commodity dichotomy

Silenced uses and moral ideals in the exchange of Danish blood and plasma

The existing literature on donor screening in transfusion medicine tends to distinguish between social concerns about discrimination and medical concerns about safety. In this article, we argue that the bifurcation into social and medical concerns is problematic. We build our case on a qualitative study of the historical rise and current workings of safety practices in the Danish blood system. Here, we identify a strong focus on contamination in order to avoid 'tainted blood', at the expense of working with risks that could be avoided through enhanced blood monitoring practices. Of further significance to this focus are the social dynamics found at the heart of safety practices aimed at avoiding contamination. We argue that such dynamics need more attention, in order to achieve good health outcomes in transfusion medicine. Thus, we conclude that, to ensure continuously safe blood systems, we need to move beyond the bifurcation of the social and medical aspects of blood supply as two separate issues and approach social dynamics as key medical safety questions.

Ida Deleuran

Papers

Public attitudes to financial incentive models for organs: a literature review suggests that it is time to shift the focus from 'financial incentives' to 'reciprocity'.

Silenced uses and moral ideals in the exchange of Danish blood and plasma

Tainted blood: Probing safety practices in the Danish blood system.