TY - JOUR
T1 - An Ethical Framework for Research Using Genetic Ancestry
AU - Lewis, Anna C.F.
AU - Molina, Santiago J.
AU - Appelbaum, Paul S.
AU - Dauda, Bege
AU - Fuentes, Agustin
AU - Fullerton, Stephanie M.
AU - Garrison, Nanibaa’ A.
AU - Ghosh, Nayanika
AU - Green, Robert C.
AU - Hammonds, Evelynn M.
AU - Jeff, Janina M.
AU - Jones, David S.
AU - Kenny, Eimear E.
AU - Kraft, Peter
AU - Mauro, Madelyn
AU - Ori, Anil P.S.
AU - Panofsky, Aaron
AU - Sohail, Mashaal
AU - Neale, Benjamin M.
AU - Allen, Danielle S.
N1 - Publisher Copyright:
© 2023 by Johns Hopkins University Press.
PY - 2023/3/1
Y1 - 2023/3/1
N2 - 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 frame-works 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 prin-ciples, 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 pro-posed framework.
AB - 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 frame-works 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 prin-ciples, 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 pro-posed framework.
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U2 - 10.1353/pbm.2023.0021
DO - 10.1353/pbm.2023.0021
M3 - Article
C2 - 37755714
AN - SCOPUS:85175726300
SN - 0031-5982
VL - 66
SP - 225
EP - 248
JO - Perspectives in Biology and Medicine
JF - Perspectives in Biology and Medicine
IS - 2
ER -