January 17, 2021

The Niche

Trusted stem cell blog & resources

Live Blogging #GeneEditSummit Day 1 Post #4: Societal Implications of human gene editing

This is post #4 of my live blogging of the #GeneEditSummit today. It is focused on societal implications so I’m really looking forward to it. You can read posts 1-3, here, here, and here summarizing the talks and key points from the meeting so far. Annelien L. Bredenoord, University Medical Center Utrecht, chaired the session.

John Harris, University of Manchester, is a philosopher and invoked Plato early in his talk. He raised 3 fallacious (in his opinion) objections to gene editing: gene editing may affect future generations (the human germline is sacred), unacceptable risk to future generations, and alleged inability to obtain consent. He called the Council of Europe concerns “nonsense”. Harris just advocated in the talk for Transhumanism, presumably via human genetic modification to make us a new species. It seems he also says we should aim for not “safe”, but rather “safe enough.” He also, to laughs, pointed out that in his opinion that “normal” human sexual reproduction is dangerous and would never be approved. Finally, he said a moratorium on human modification is the wrong course.

Hille HakerHille Haker, Loyola University Chicago (pictured above), thinks differently. She proposed a 2-year moratorium on human genetic modification. The scientific contribution should be to do something good for mankind, she said. What is the role of ethics? We need to assess goals and means. Can gene editing heal? Yes and no. Her view is that the goal of life and freedom as well as dignity cannot be achieved by gene editing. Embryos and children, in her view, are products and prospective parents are consumers in this gene editing universe.

Marcy Darnovsky, Center for Genetics and Society, strongly advocated for a moratorium on human genetic modification. This meeting, she argued, should be viewed as an initial step and not some kind of final decision-making event. She also was concerned that the meeting is too insular and did not include speakers from important stakeholders. Germline editing should not, she said, be considered a medical technology. “It wouldn’t prevent an existing healthy person from developing a disease.” Social risks must be considered as well, Marcy asserted, and they largely haven’t been at the meeting so far. “The temptation to enhance future children is too dangerous.”

Sharon F. Terry, of Genetic Alliance, has two children who faced a rare, genetic disease. The kids are doing well now. Finally a patient perspective! She gave an overview of advocacy organizations. She polled people in her community about human gene editing. Very wide views came back. An interesting question came up: when should a condition be considered a disease? Where’s that line? It’s hard to say. She put out there the idea of “tempered urgency” on genetic diseases and gene editing.

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