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
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