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

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’.

Source: European Journal of Human Genetics - April 16, 2024 Category: Genetics & Stem Cells Authors: 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 Ri Source Type: research