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Friday, January 18, 2019

CRISPR in China: Why Did the Parents Give Consent?

Dena Davis
The Hastings Center
Originally posted December 7, 2018

The global scientific community has been unanimous in condemning Chinese scientist He Jiankui, who announced last week that he used the gene-editing technology called CRISPR to make permanent, heritable changes to the genes of two baby girls who were born this month in China. Criticism has focused on Dr. He’s violation of worldwide acknowledgement that CRISPR has not been proven to be safe and ready to use in humans. Because CRISPR edits the actual germline, there are safety implications not only for these two girls, but for their progeny. There is also fear, expressed by the American Society for Reproductive Medicine, that this one renegade scientist could spark a backlash that would result in overly restrictive regulation.

Largely missing from the discussion is whether the twins’ parents understood what was happening and the unproven nature of the technology.  Was the informed consent process adequate, and if so, why on earth would they have given their consent?

The info is here.

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