Re-envisioning community genetics: community empowerment in preventive genomics.

Autor: Wand H; Department of Cardiology, Stanford Medicine, Stanford, CA, USA. hwand@stanfordhealthcare.org.; Center for Inherited Cardiovascular Disease, Stanford Health Care, Palo Alto, CA, USA. hwand@stanfordhealthcare.org.; Biomedical Data Science and Genetics (By Courtesy), Stanford Medicine, Stanford, CA, USA. hwand@stanfordhealthcare.org., Martschenko DO; Stanford Center for Biomedical Ethics, Stanford Medicine, Stanford, CA, USA., Smitherman A; Patient and Family Partner Program, Stanford Health Care, Palo Alto, CA, USA., Michelson S; Patient and Family Partner Program, Stanford Health Care, Palo Alto, CA, USA., Pun T; Patient and Family Partner Program, Stanford Health Care, Palo Alto, CA, USA., Witte JS; Biomedical Data Science and Genetics (By Courtesy), Stanford Medicine, Stanford, CA, USA.; Department of Epidemiology and Population Health, Stanford Medicine, Stanford, CA, USA.; Stanford Medicine, Stanford Cancer Institute, Stanford, CA, USA., Scott SA; Department of Pathology, Stanford University, Stanford, CA, USA.; Clinical Genomics Laboratory, Stanford Health Care, Palo Alto, CA, USA., Cho MK; Stanford Center for Biomedical Ethics, Stanford Medicine, Stanford, CA, USA., Ashley EA; Department of Cardiology, Stanford Medicine, Stanford, CA, USA.; Center for Inherited Cardiovascular Disease, Stanford Health Care, Palo Alto, CA, USA.; Biomedical Data Science and Genetics (By Courtesy), Stanford Medicine, Stanford, CA, USA.
Jazyk: angličtina
Zdroj: Journal of community genetics [J Community Genet] 2023 Oct; Vol. 14 (5), pp. 459-469. Date of Electronic Publication: 2023 Feb 11.
DOI: 10.1007/s12687-023-00638-y
Abstrakt: As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many healthcare systems to support person-centered and value-based care. This paper argues that any conversation about whether and how to design and implement PGS clinical services requires dynamic engagement with local communities, patients, and families. These parties often face the consequences, both positive and negative, of such uncertainties and should therefore drive clinical translation. As a collaborative effort between hospital stakeholders, community partners, and researchers, this paper describes a community-empowered co-design process for addressing uncertainty and making programmatic decisions about the implementation of PGS into clinical services. We provide a framework for others interested in designing clinical programs that are responsive to, and inclusive and respectful of, local communities.
(© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)
Databáze: MEDLINE
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