Genomic newborn sequencing holds the promise of benefiting families with children with severe, actionable genetic conditions. Securing this benefit requires navigating ethical, legal, and social implications, which we review in this piece out now in EJHG. rdcu.be/fhE1X
Anna Lewis
@acflewis
Bioethicist working on ethical, legal, social issues (ELSI) of genomics, at Harvard's E J Safra Center for Ethics
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In this piece we get into the nitty gritty of data sharing decisions as encountered as part of a large project, and then zoom out from there to the importance of data governance (and what that can look like).
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A short piece on navigating the complex ethical, legal and social landscape for integrating genomic sequencing into newborn screening: rdcu.be/e2lT9. This points to a policy tool from the GA4GH, in which we identify 59 decision points implementers face.
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: hubs.la/Q03cHRdb0
#FOGBoston
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: hubs.la/Q03cHRdb0
#FOGBoston
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. rdcu.be/dTpfu