Public Attitudes about Gene Editing

A recent Perspective article in the New England Journal of Medicine summarizes the results of several public surveys about the acceptability of gene editing.  This summary, which is freely available to the general public online without a subscription, is worth a read.  I think it’s limited by the fact that most of the surveys listed are old.  Only two were done since 2014, and the oldest is from 1985.

Still, some of the key points are enlightening:

  • ·       It appears that the general public is not well-informed about gene editing or familiar with the terms used.
  • ·       The specifically about gene editing that could be inherited for several, even many, generations.
  • ·       Still, majorities questioned in the surveys favored “gene therapy” or “gene editing” that would:

o   Attempt to treat an existing person whose genes were being altered, to cure a serious disease or reduce the risk of developing a fatal disease later in life;

o   Alter a parent’s genes to reduce the risk of serious disease being transmitted to his or her offspring—presumably, direct offspring (the next generation) were in view;

o   “Change the makeup of human cells to stop children from inheriting a non-fatal birth defect.”

  • ·       Minorities—but sometimes substantial minorities (10-44%) approved of altering genes to improve attributes like appearance or intelligence.
  • ·       In a 1990 survey, 49 percent expressed approval of altering an unborn child’s genes in the womb to “improve his/her general physical health,” but in the most recent survey (2016), “only” 26 percent (still a substantial fraction, in my view) approved “changing the genes of unborn babies to reduce their risk of developing certain serious diseases.”
  • ·       In the 2016 survey, over half approved of government funding to develop gene therapy treatments, but that approval fell to 44 percent if the procedure were to be done on “unborn babies,” and to 14 percent if the goal were to improve intelligence or physical attributes.

Impressions:

  • ·       It’s hard to educate and get the public to engage in the issues raised by gene editing.  Most folks just don’t think about it, and doing surveys that educate and obtain respondents’ informed opinions is hard.
  • ·       Most of the public seems to want to observe what ethicists call the “therapeutic boundary” between treatment and enhancement.
  • ·       It’s not clear that the public really grasps that germline or embryonic gene editing is “for keeps,” or that questions have been posed to them in a way that confronts them with that.
  • ·       The authors of the NEJM article comment that people may get more comfortable with gene editing as experience is gained.  That seems to go almost without saying, whether one is an enthusiast or not.  Public opinion is changeable, and one would expect that inheritable gene editing, for whatever purpose, will eventually be accepted, as immediate risks become apparently less or worth it, and longer-term risks, as they always are, remain hard to grasp or assess.

I and others have posted extensively on this topic last year—see for example here and here and here and here.  I do not think it wise to introduce heritable changes into the human genome for any reason, and I worry that enthusiasm for all sort of goals will overtake any initial caution about the scope of the practice.  But I worry that 20 years from now that last sentence will look quaint at best.

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