Live Blogging #GeneEditSummit Day 1 Post #4: Societal Implications

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.

4 thoughts on “Live Blogging #GeneEditSummit Day 1 Post #4: Societal Implications

  1. Thanks for keeping us up to the minute with this bioethics marathon, Paul. I find it bewildering as there are so many vested interests, commercial, (socio)political and personal, that it appears a neutral unbiased opinion is not really possible.

    In cases where energy, economy, rights issues, etc are debated, the weight of government would usually fall on the side of (what is believed to be) overall public good – but here public good is at the heart of the debate and it’s definition is now too diverse. Do we even have a reference point?

  2. I see a clear demarcation between tinkering genes to alleviate suffering vs manipulating them to massage the ego.

    The latter — illustrated by transhumanism — is not something that society should support, in my view.

    The former is something that society should be sympathetic towards. And the greater the suffering, the less restrictive the law/regulations should be.

    As for when a condition should be considered a disease…. Might I suggest; When it causes dis-ease; That is to say, suffering. Disease and suffering are not defined, they are experienced. They are experienced as a matter of degree.

    The transhumanism crowd might like to consider a couple of issues:

    (1) GM businesses didn’t like the idea of clearly labelling GM foods so they lobbied for laws that leave the consumer guessing. One gets the feeling that they are not exactly proud of their product — so they resort to deception. So what about the GM humans, those transhumans or super-duper designer humans or whatever they would call themselves? Would they be upfront? Could they even deceive us?

    (2) Beware of the competitive exclusion principle. Transhumanizing into another species (or several species) is likely to have a very violent outcome. Heck, the wars we fight within our species are as nothing compared to the wars we wage on other species.

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