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An Ethical Framework for Research Using Genetic Ancestry.

Authors :
Lewis ACF
Molina SJ
Appelbaum PS
Dauda B
Fuentes A
Fullerton SM
Garrison NA
Ghosh N
Green RC
Hammonds EM
Jeff JM
Jones DS
Kenny EE
Kraft P
Mauro M
Ori APS
Panofsky A
Sohail M
Neale BM
Allen DS
Source :
Perspectives in biology and medicine [Perspect Biol Med] 2023; Vol. 66 (2), pp. 225-248.
Publication Year :
2023

Abstract

A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on rule following, the framework is designed to build researchers' capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers' intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework.

Details

Language :
English
ISSN :
1529-8795
Volume :
66
Issue :
2
Database :
MEDLINE
Journal :
Perspectives in biology and medicine
Publication Type :
Academic Journal
Accession number :
37755714
Full Text :
https://doi.org/10.1353/pbm.2023.0021