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Genetically engineered children?

by Marcy DarnovskyThe Hill
December 1st, 2015

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Should powerful new molecular engineering techniques be used to create genetically modified children? This is the question – literally, about the future of humanity – that’s been put on the near horizon by rapidly developing technology. Hundreds of people from around the world are convening this week at an “international summit on human gene editing” hosted by the U.S. National Academies of Sciences and Medicine here in Washington, DC to grapple with this profoundly consequential issue.

This conversation about human germline modification – that is, changing the genes we pass down to future generations – has engaged scholars, policy makers, writers, and filmmakers for at least several decades, but most often in small circles with privileged information or among those with a science fiction imagination. Many, perhaps most, who have contemplated the temptation to “improve” our offspring have concluded that it would be deeply unwise.

Among their concerns: Why should anyone have the right to deliberately and irreversibly engineer the biology of generations to come? What assumptions would guide any choice of “good” genes to insert or “bad” genes to delete? How would genetically designed children fare in their families, and how would families navigate the inevitable commercial and cultural pressures to upgrade their offspring? If such procedures took hold among those able to afford them, would the perception that their children were genetically “superior” introduce new kinds of inequality, conflict, and discrimination into the world?

By the early 2000s, some 40 countries, including most with developed biotech sectors (but not the United States), had considered these questions and written prohibitions against human germline modification into their national laws. The Council of Europe’s Convention on Human Rights and Biomedicine, a binding treaty, also put the creation of genetically modified humans off limits.

Notwithstanding this widespread policy accord, and significant public opinion against germline modification, a number of futurists and scientists have continued to press the case for proceeding. Some enthuse about “enhancing” next-generation children with traits ranging from super-strong bones to night vision based on owl DNA. Others present germline modification as a medical procedure, though that’s a stretch since by definition it would not treat any existing patient.

Gene editing that targets specific tissues in living people – what’s known as gene therapy – could hold promise, if it proves to be safe and effective. But the medical justification for creating genetically modified children is dubious. True, germline modification could be aimed at preventing the births of children whose parents are at risk of transmitting a genetic disease. But that can also be accomplished, in nearly every case, using now-conventional embryo screening techniques.

These techniques aren’t “ethics-free”; they are controversial when used simply to satisfy parents’ preference for a boy (or less commonly, a girl), or to select against embryos affected by conditions that many consider part of human variation. But they give parents a safer and less socially fraught way to prevent passing on conditions like Huntington’s disease, or to ensure that a child isn’t affected by or even a carrier for, say, Tay-Sachs.

The upcoming National Academies meeting has been organized as a high-profile venue for deliberations of this sort. Measured on criteria of democratic engagement and accountability, how does it look so far? There are hopeful signs. Some speakers and sessions will focus on social and policy implications, which to date have been overshadowed by narrow issues of technical safety. A webcast of the event will allow global viewing and remote submission of questions and comments.

Personally, I am appreciative of having been invited to speak about the concerns of the public interest organization I head. But I’m less than encouraged by the absence of other such organizations. Where are the thought leaders who focus, for example, on environmental protection, disability rights, reproductive rights and justice, racial justice, labor, or children’s welfare? The release today of our report that addresses human germline modification, and an open letter calling for its prohibition, are early indications that, once aware of what’s at stake, many NGOs and members of the public will share strong concerns about it.

The powerful new gene editing tools now under consideration could be used for scientific and medical breakthroughs, or misused to undermine human rights and human equality. They are an extremely risky and unneeded approach to having children, and would put all of us at risk of finding ourselves in a world of genetic “haves” and “have-nots.” Once this technology hit the marketplace, there would be no going back. The United States should join the dozens of other countries that have steered clear of this unnecessary and unacceptably dangerous trajectory.

Darnovsky is executive director of the Center for Genetics and Society.



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