Precision Medicine for Whom? Public Health Outputs from "Genomics England" and "All of Us" to Make Up for Upstream and Downstream Exclusion.

BIOMEDICAL RESEARCH health care delivery health policy human subjects research right to health care

Journal

The American journal of bioethics : AJOB
ISSN: 1536-0075
Titre abrégé: Am J Bioeth
Pays: United States
ID NLM: 100898738

Informations de publication

Date de publication:
06 Mar 2023
Historique:
entrez: 6 3 2023
pubmed: 7 3 2023
medline: 7 3 2023
Statut: aheadofprint

Résumé

This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current "diversity and inclusion" efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion.

Identifiants

pubmed: 36876959
doi: 10.1080/15265161.2023.2180108
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-15

Auteurs

Classifications MeSH