An Ethical Framework for Research Using Genetic Ancestry

Anna C.F. Lewis, Santiago J. Molina, Paul S. Appelbaum, Bege Dauda, Agustin Fuentes, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Nayanika Ghosh, Robert C. Green, Evelynn M. Hammonds, Janina M. Jeff, David S. Jones, Eimear E. Kenny, Peter Kraft, Madelyn Mauro, Anil P.S. Ori, Aaron Panofsky, Mashaal Sohail, Benjamin M. Neale, Danielle S. Allen

    Research output: Contribution to journalArticlepeer-review

    3 Scopus citations

    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 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.

    Original languageEnglish (US)
    Pages (from-to)225-248
    Number of pages24
    JournalPerspectives in Biology and Medicine
    Volume66
    Issue number2
    DOIs
    StatePublished - Mar 1 2023

    All Science Journal Classification (ASJC) codes

    • Health Policy
    • Issues, ethics and legal aspects
    • History and Philosophy of Science

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