ELSIcon2022 Paper: Genetic data and the collective good: participants as leaders to reconcile individual and public interest

ELSIcon2022 • Paper • June 2, 2022

Ilaria Galasso, Susi Geiger

This paper problematizes the notion of collective good in the contest of medical research and juxtaposes consequentialist and deontological ethics around appropriating and using genetic data. It scrutinizes the frictions between public and individual interests, and between the duty to share (in the name of the “public good”, Harris 2005, Schaefer et al. 2009, Rhodes 2017) and the right not to share (in the name of individual sovereignty, Archard 2008, Beauchamp 2010) genetic data. This paper is grounded on documentary analysis and fieldwork interviews with participant representatives or research leaders concerned with participant protection and involvement in leading genetic research projects (All of Us in the US and Genomics England in the UK) or around genetic data controversies. We focus particularly on two recent controversies: the case of the UK institute Wellcome Sanger accused of planning unauthorized commercialization of African DNA samples (Stokstad 2019), and the case of the company Genuity Science planning genetic research on brain tumor samples in Ireland with no explicit patient consent (Noteworthy 2020). We question the link between genetic data use and the collective good and conclude by advocating for participant co-governance and co-leadership in genetic research, especially when minorities or vulnerable communities are involved. We argue that, beyond and rather than informed consent and participant/public consultation and engagement, medical research being led or co-led by participant and concerned community representatives prevents exploitation and promotes transparency and trust, fostering the equitable pursuit of the collective good while protecting participant sovereignty.<br>