While the demands for greater engagement in science in general and regulatory science in particular have been steadily increasing, we still face limited understanding of the empirical resonance of these demands. Against this context, this paper presents findings from a recent study of a potential participatory opening of the German Federal Institute for Risk Assessment, a prominent regulatory scientific organization in the field of risk governance. Drawing upon quantitative surveys of the public and selected professional experts as well as in-depth (...) qualitative expert interviews, we identify a general support for greater engagement in science-based risk assessment. However, we also find significant contestation concerning its potential enactment and its normative and strategic merit. Underlying these contestations, we identify the persistence of a normal view of science and decisionist understanding of risk assessment, which create conflicting legitimacy demands for BfR and other regulatory scientific organizations. Together with concerns about imbalances in the power to participate, especially in highly specialized engagement processes, these pose significant challenges for the institutionalization of more participatory practices. (shrink)

Social scientists operate in a range of roles within the public engagement with science and technology agenda. Social scientists’ strengths in respect to “translation” and “intermediary” skills have captured attention at a time of disciplinary pressure to demonstrate impact. This article explores how social scientists’ engaged in public engagement with science and technology consider their role(s), drawing on 21 semistructured interviews and Horst and Michael’s proposals of an emergence model, in addition to ongoing discussions related to expertise. The findings suggest (...) there are many benefits when social scientists engage with “strangers,” both scientific and public, but that focusing only on pragmatic elements misses the true opportunity such working relationships can offer among critical friends. (shrink)

In the last decade, preimplantation genetic testing have become widely used and in 2005 constituted 5 percent of all in vitro fertilization cycles performed in Europe. Their diffusion, however, is not homogenous; while in some countries they are prohibited and in others hardly implemented, Spain performs 33 percent of all the PGD/pgs. While policy guidelines and mainstream bioethics address PGD from a patient choice perspective, disability studies insist on PGD’s potentiality for discrimination. Alternatively, other authors have explored PGD/pgs from the (...) perspective of geneticization but little work has been done on how PGD/pgs are framed by the members of national regulatory bodies. Combining the analysis of juridical documents with semistructured interviews with members of the Spanish National Assisted Reproduction Committee, this study suggests that the remarkable diffusion of PGD/pgs in Spain may be largely due to the interaction between the growing momentum enjoyed by embryonic stem cell research and a vibrant expansion of IVF business along the Mediterranean coast. In this process, genetic issues per se seem to play a minor role, although the prevention of genetic diseases now constitutes the master narrative underpinning the extension of PGD from monogenic, early onset, diseases to polygenic, late-onset, ones. (shrink)

To be successful, policy must anticipate a broad range of constituents. Yet, all too often, technology policy is written with primarily mainstream populations in mind. In this article, drawing on Value Sensitive Design and discount evaluation methods, we introduce a new method—Diverse Voices—for strengthening pre-publication technology policy documents from the perspective of underrepresented groups. Cost effective and high impact, the Diverse Voices method intervenes by soliciting input from “experiential” expert panels. We first describe the method. Then we report on two (...) case studies demonstrating its use: one with a white paper on augmented reality technology with expert panels on people with disabilities, people who were formerly or currently incarcerated, and women; and the other with a strategy document on automated driving vehicle technologies with expert panels on youth, non-car drivers, and extremely low-income people. In both case studies, panels identified significant shortcomings in the pre-publication documents which, if addressed, would mitigate some of the disparate impact of the proposed policy recommendations on these particular stakeholder groups. Our discussion includes reflection on the method, evidence for its success, its limitations, and future directions. (shrink)

Biomedical research involving human participants is highly regulated and subject to stringent ethical requirements. Clinical research ethics, regulation and policy have tended to focus almost exclusively on the protection of participants' interests against harms that might result from taking part in research. Less consideration, however, has been given to the interests that patients may themselves have in research participation, even in trials that may be beyond the bounds of current clinical research practice. In this paper, we consider the case of (...) a suggested extension to clinical trial protocols to explore the ethics of participation in ‘risky’ research. We argue that patients may have a strong interest in taking part in research, and that even when greater-than-usual risks may be present, such research can be both ethically and scientifically justified. Finally, we suggest that there might be scope in some cases to assert a right to participate in research, and that the possibility of such a right merits further consideration. (shrink)