ArticleThe American journal of bioethics : AJOB2024
Precision Medicine for Whom? Public Health Outputs from "Genomics England" and "All of Us" to Make Up for Upstream and Downstream Exclusion.
Article in The American journal of bioethics : AJOB, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Rare disease genomics and justice: overview of a workshop at the Fondation Brocher, 22-24 January 2025.Journal of community genetics · 2026Article
- Factors Influencing Participation in Precision Health Research Among Diverse Individuals in South Carolina.Journal of racial and ethnic health disparities · 2026Article
- Navigating fairness aspects of clinical prediction models.BMC medicine · 2025Article
- Genetic research and the collective good: participants as leaders to reconcile individual and public interests.Journal of medical ethics · 2025Article
- Breaking research silos to achieve equitable precision medicine in rheumatology.Nature reviews. Rheumatology · 2025Review
- The Impact of Artificial Intelligence on Cancer Diagnosis and Treatment: A Review.Cancer informatics · 2025Review
- Research for all: building a diverse researcher community for the All of Us Research Program.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Precision medicine and Friedreich ataxia: promoting equity, beneficence, and informed consent for novel gene therapies.International journal for equity in health · 2024Article
- The clinical, mechanistic, and social impacts of air pollution on atopic dermatitis.The Journal of allergy and clinical immunology · 2024Review
- Genomic Answers for Kids: Toward more equitable access to genomic testing for rare diseases in rural populations.American journal of human genetics · 2024Review
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
Identifiers
36876959What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.