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
Part of this tool is a synthesis of the literature for all 59 decision points, organized by empirical work, conceptual work, and suggested and actual solutions adopted for each of the 59 decision points.
ga4gh.org/document/genetic-n…
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).
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
I am proud to share our latest paper📜 “The multi-scale complexity of human genetic variation beyond continental groups”, just pre-printed on @biorxivpreprint!
Link Here ➡️biorxiv.org/cgi/content/shor…
📊 The GA4GH Diversity in Datasets policy framework encourages research teams to consider what types of genetic diversity and what range of non-genetic factors are needed for their project.
Read the press release here: bit.ly/4hNGP8E
Who should be allowed to compete in the women's categories of elite sports? Just out in American Journal of Bioethics @bioethics_net, @acflewis and I offer an approach to this Q w/respect to female athletes with differences of sexual development. OPC here: tandfonline.com/doi/full/10.…
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