Essays on stem cell policy seem to fall into three categories. Some essays in this collection are about logic and principles. Others are about practices and beliefs. The former group draws lines and defends them, a normative project. The latter group attempts to explain the lines that already exist, a descriptive project that may have important normative goals. Still other essays, by scientists, are about growing stem cell lines instead of drawing them.The purpose of this essay is to situate the (...) lines being drawn around stem cell science in the larger landscape of health policy. I am interested in the things that cause health policy to take particular directions and the consequences of those directions for cost, access, and quality — all of which are determined in part by biomedical innovations such as those potentially derived from stem cells. (shrink)

Social scientists have begun elucidating the variables that influence public trust in science, yet little is known about hype in biotechnology and its effects on public trust. Many scholars claim that hyping biotechnology results in a loss of public trust, and possibly public enthusiasm or support for science, because public expectations of the biotechnological promises will be unmet. We argue for the need for empirical research that examines the relationships between hype, public trust, and public enthusiasm/support. We discuss the complexities (...) in designing empirical studies that provide evidence for a causal link between hype, public trust, and public enthusiasm/support, but also illustrate how this may be remedied. Further empirical research on hype and public trust is needed in order to improve public communication of science and to design evidence-based education on the responsible conduct of research for scientists. We conclude that conceptual arguments made on hype and public trust must be nuanced to reflect our current understanding of this relationship. (shrink)

I could tell many war stories about my experience serving on the President's Council on Bioethics—one of the most controversial national bioethics commissions so far—but I want to focus instead on how the experience influenced my views on bioethics, politics, and the potential contributions of national commissions. The executive order that established the Council directed it to consider policy questions, but it spoke primarily of providing a forum for national discussion, inquiry, and education. In this sense, the Council's mission departed (...) from that of other national bioethics commissions, which have had more direct policy functions. Most bioethics commissions consider a range of ethical positions in their reports, but their primary objective has been to develop consensus recommendations on whatever topic they are addressing. The Council's executive order moved away from the consensus‐based policy model and called for deep attention to contested ideas. Although the search for consensus may be the most suitable approach for policy activities, it can lead to a bland and anemic version of bioethics. The Council sought to contribute thick bioethical analysis. (shrink)

Many features of the existing biomedical research enterprise rest on questionable judgments about the value of research. Policymakers and research ethicists make assumptions about research value that aren't necessarily warranted. A more balanced view of research value could contribute to more defensible decisions about research policy and practice.

The government-sponsored Tuskegee syphilis study had a huge impact on U.S. research ethics and policy. Study investigators regarded subjects as “mere means” to their research ends, which led to a variety of ethical violations. Investigators used deception so that subjects would see participation as therapeutic — researchers promoted the therapeutic misconception because this advanced study objectives. The research would produce important information, and this justified lying to research subjects.Today we see this sort of intentional deception as unjustified no matter how (...) important a study might be. But what do we make of the claim that the syphilis study had value? As James Jones reported, its objectives were to test the prevailing views that syphilis affected blacks and whites differently, and that the disease was less harmful to blacks than whites. U.S. Public Health Service researchers and officials assumed the study had sufficient value to justify not only deceiving subjects, but also depriving them of safe and effective treatment. (shrink)