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September 17, 2019
Dear John,
CGS published two new articles recently we thought you’d want to know about.
Illness or Identity? A Disability Rights Scholar Comments on the Plan to Use CRISPR to Prevent Deafness ( [link removed] )
Katie Hasson, Biopolitical Times | 09.10.2019
Bioethics professor and disability rights scholar Jackie Leach Scully responds to CGS’ questions about Denis Rebrikov’s announcement that he’ll use CRISPR to edit the genomes of human embryos, targeting genes linked to inherited deafness. In addition to everything else that's wrong with using CRISPR to alter heritable genes, his plan begs the important question: Who decides what constitutes a “serious condition”?
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Twenty Years Later, What Have We Learned from Jesse Gelsinger’s Death? ( [link removed] )
Pete Shanks, Biopolitical Times | 09.17.2019
September 17, 2019, marks the 20th anniversary of the day Jesse Gelsinger died after volunteering for a gene therapy trial. His death has become an iconic story of misconduct, greed, and ambition. Many accounts also lament that it set the field of gene therapy back ten years. However, it was the scandal revealed by the subsequent investigations that may hold this tragedy’s most salient lessons.
Thank you for reading and sharing. Be sure to follow CGS on Twitter ( [link removed] ) and Facebook ( [link removed] ) for the latest news and commentary on human genetic technologies.
Sincerely,
[ Picture of Marcy Darnovsky ]

Marcy Darnovsky
Executive Director
Center for Genetics and Society ( [link removed] )

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