Policy arguments in support of stem cell research often use economic benefit as a key rationale for permissive policies and increased government funding. Economic growth, job creation, improved productivity, and a reduction in the burden of disease are all worthy goals and, as such, can be used as powerful rhetorical tools in efforts to sway voters, politicians, and funding agencies. However, declarations of economic and commercial benefit — which can be found in policy reports, the scientific literature, public funding policies, (...) and the popular press — have arguably created a great deal of expectation. Can stem cell research deliver on the economic promise? And what are the implications of this economic ethos for the researchers who must work under its shadow? (shrink)

The empirical literature on the ethical, legal, and social implications of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Little attention has been paid to the perspectives and practices of those who operate biobanks. We conducted a study of U.S. biobanks consisting of six in-depth case studies and a large online survey, which was developed from the case study results. The case studies included qualitative interviews with (...) a total of 24 personnel. Both interview and survey questions focused on how biobanks operate, and what policies and practices govern their relationships with specimen contributors and the researchers who use the specimens. Analysis revealed unexpected ethical dilemmas embedded in those policies and practices that highlight a need for practical planning. In this paper, we review three issues seldom explored in the ELSI literature: 1. the discrepancy between biobankers’ hope that the bank will exist “permanently” and the fact that funding is limited; 2. the lack of planning for what will happen to the specimens if the bank closes; and 3. the concern that once collected, specimens may be underutilized. These dilemmas are missing from current public representations of biobanks, which instead focus on the intrinsic value in storing specimens as essential to the advancement of translational research. We argue that attention to these issues is important for biobanking, and that greater transparency of these policies and practices will contribute to promoting public trust in biobanks. (shrink)

Ocular gene transfer clinical trials are raising hopes for blindness treatments and attracting media attention. News media provide an accessible health information source for patients and the public, but are often criticized for overemphasizing benefits and underplaying risks of novel biomedical interventions. Overly optimistic portrayals of unproven interventions may influence public and patient expectations; the latter may cause patients to downplay risks and over-emphasize benefits, with implications for informed consent for clinical trials. We analyze the news media communications landscape about (...) ocular gene transfer and make recommendations for improving communications between clinicians and potential trial participants in light of media coverage. (shrink)

In the context of stem cell research, the promise of economic growth has become a common policy argument for adoption of permissive policies and increased government funding. However, declarations of economic and commercial benefit, which can be found in policy reports, the scientific literature, public funding policies, and the popular press, have arguably created a great deal of expectation. Can stem cell research deliver on the economic promise? And what are the implications of this economic ethos for the researchers who (...) must work under its shadow? (shrink)

In recent years we have seen the emergence of “personalised medicine.” This development can be seen as the logical product of reductionism in medical science in which disease is increasingly understood in molecular terms. Personalised medicine has flourished as a consequence of the application of neoliberal principles to health care, whereby a commercial and social need for personalised medicine has been created. More specifically, personalised medicine benefits from the ongoing commercialisation of the body and of genetic knowledge, the idea that (...) health is defined by genetics, and the emphasis the state places on individual citizens as being “responsible for” their own health. In this paper I critique the emergence of personalised medicine by examining the ways in which it has already impacted upon health and health care delivery. (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)

Several science studies scholars report instances of scientific “hype,” or sensationalized exaggeration, in journal articles, institutional press releases, and science journalism in a variety of fields (e.g., Caulfield and Condit 2012). Yet, how “hype” is being conceived varies. I will argue that hype is best understood as a particular kind of exaggeration, one that explicitly or implicitly exaggerates various positive aspects of science in ways that undermine the goals of science communication in a particular context. This account also makes clear (...) the ways that value judgments play a role in judgments of “hype,” which has implications for detecting and addressing this problem. (shrink)