Ethical and social implications of public–private partnerships in the context of genomic/big health data collection

Ruth Horn, Jennifer Merchant, Ruth Horn, Jennifer Merchant, Mark Bale, Natalie Banner, Anne Cambon-Thomsen, Herve Chneiweiss, Angus Clarke, Yael Hashiloni-Dolev, Angeliki Kerasidou, Anneke Lucassen, Michael Parker, Christine Patch, Barbara Prainsack, Aviad Raz, Gesine Richter, Eva Winkler

Research output: Contribution to journalArticlepeer-review

Abstract

This paper reports on the findings of an international workshop organised by the UK-France+ Genomics and Ethics Network (UK-FR + GENE) in 2022. The focus of the workshop were the ethical and social issues raised by public-private partnerships in the context of large-scale genomics initiatives in France, Germany, the United Kingdom and Israel, i.e. collaborations where commercial entities are given access to publicly held genomic data. While the public sector relies on partnerships with commercial entities to exploit the full potential of the data it holds, such collaborations may have an impact on the return of benefits to the public sector and on public trust, and subsequently challenge the social contract. The first part of this paper explores the ways in which the four countries examined respond to the challenges posed to the social contract, and what safeguards they put in place to secure public trust. The second part presents three approaches to address the challenges of private-public partnerships in secondary data use. In conclusion, this paper offers a set of minimum requirements for these partnerships within solidarity-based publicly funded healthcare systems. These include the necessity of public-private partnerships to (1) contribute to the public benefit and minimise harm produced by the use of publicly held data; (2) avoid prioritisation of commercial interests over robust governance structures to guarantee benefits to the public and protect donors, especially marginalised groups; (3) side-step the pitfalls of the rhetoric of solidarity and be transparent about the challenges to return the benefits to ‘all’.

Original languageAmerican English
JournalEuropean Journal of Human Genetics
DOIs
StateAccepted/In press - 1 Jan 2024

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)

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