In recent years, scholars in science and technology studies have examined the advice that experts make for the governance of biomedicine. This STS scholarship, however, has not yet explained how the credibility of ethics expertise in public bioethics is produced from particular conditions and extended to different settings. This article describes how a bioethics commission created the ethical principle of justice and examines how the ethics expertise established public credibility on the justice principle. The findings suggest that the principle of (...) justice was first explored as the diverse concepts of “equality” with reference to the review of fetal research, redefined as “fairness” or “desert” from theoretical viewpoints, and then circulated as a standard framework in local settings. The credibility of ethics expertise, based on the coproduction of material and moral orders, was made possible by reaching common ground among different data, principles, and background theories. (shrink)

The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service. This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project —the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical (...) concerns. The UK’s 100 kGP, promoted and delivered by Genomics England Limited, is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the importance of ethical governance and decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’ entities do not necessarily reflect a space within which moral thinking occurs. Rather, the ‘ethical work’ conducted by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL’s ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL. (shrink)

In this paper we reflect on the looming question of what constitutes expertise in ethics. Based on an empirical program that involved qualitative and quantitative as well as participatory research...