Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits

Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychi...

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Bibliographic Details
Published in:The Hastings Center report 2024-12, Vol.54 (S2), p.S56-S65
Main Authors: Natri, Heini M., Chapman, Carolyn Riley
Format: Article
Language:English
Subjects:
behavioral traits
community engagement
disability
genomics
neurodevelopmental and psychiatric traits
research ethics
Online Access:Get full text
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Summary:Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study.
ISSN:0093-0334
1552-146X
1552-146X
DOI:10.1002/hast.4930