Anna Lewis
@acflewis
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Bioethicist working on ethical, legal, social issues (ELSI) of genomics, at Harvard's E J Safra Center for Ethics
Cambridge, MA
Joined December 2013
I'm excited to be speaking at #FOGBoston this June 24th-25th, on inclusivity and trust in genomics. Let me know if you have a question you'd like me to try and answer during my session!.Registration is FREE for >90% of attendees, reserve here: #FOGBoston
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RT @PennMedCSO: Join @PennGGHE May 14-15 for: "Inclusive Genomics to Promote Health Excellence" ft'ing @egatkinson, Amadou Gaye, Omer Gokcu….
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RT @FLGenomics: We're excited to hear from @acflewis (Research Scientist and Associate, @harvardmed and @BrighamWomens) at #FOGBoston! Anna….
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RT @SashaGusevPosts: How population stratification makes environments look like genes. A short 🧵:
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RT @MaxolotlMad: I am proud to share our latest paper📜 “The multi-scale complexity of human genetic variation beyond continental groups”, j….
biorxiv.org
Traditional clustering and visualization approaches in human genetics often operate under frameworks that assume inherent, discrete groupings[1][1],[2][2]. These methods can inadvertently simplify...
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RT @SPolcz: Who should be allowed to compete in the women's categories of elite sports? Just out in American Journal of Bioethics @bioethic….
tandfonline.com
Published in The American Journal of Bioethics (Vol. 24, No. 11, 2024)
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Delighted to have worked with an international group on this, including.@M_Raven_Adams, @blueyedgenes, @aimelumaka, folks at @engageWCS, and many others.
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The policy framework:
ga4gh.org
Global Alliance for Genomics & Health - “Diversity in Datasets Policy v2.4”
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Here are the four questions that we suggest researchers ask themselves. We hope these provide a useful guide!
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Research teams make decisions throughout the data lifecycle relevant to how diverse data further the ends of their research — diversity in data is not just about recruitment, e.g. decisions about analysis approach, data sharing, all matter. See the policy doc for many examples.
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Some type of equity will often — but not always — be the driving consideration. But work is needed to delineate exactly what is being appealed to with an appeal to equity.
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Corollary: This means that diversity in data is not necessarily about representativeness.
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Only with these ends clearly specified will it become apparent what types of diversity in data are needed to achieve them.
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We argue that diversity in data is a means to an end, not an end in itself. As a first step, researchers need to think carefully about the ends that their research are designed to promote. These must be aligned with ethical norms.
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The field is awash in calls for more diverse data, but there's little follow up guidance on how to think about what types of diversity are needed and why, or how to act on this throughout the research process.
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What do we mean by diversity in data in genetics, and how should we achieve the benefits it is designed to bring? Piece in Nature Genetics out today, summarizing a new GA4GH policy framework. A thread.
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RT @jorsmo: This is going to be a great one - with @zakkohane @RosalindPicard @AmitEtkin @mpwpaulus @appelbap @EikoFried @royperlis @Justin….
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RT @GeneticsSociety: .@AJHGNews' latest article from @acflewis et al. outlines how the eMERGE IV Network developed strategies to integrate….
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