Posted on July 19, 2018 at 11:12 PM
Some of the cable news shows ran segments on the report released this week by Britain’s Nuffield Council on Bioethics, “Genome editing and human reproduction: social and ethical issues.” Full disclosure: I have not yet read the full report, only the short summaries (all of which are available for free download at the link here).
The TV teasers—”U.K. bioethics council says that gene-editing children may be morally acceptable” were accurate. The key conclusion is that “the use of heritable genome editing interventions to influence the characteristics of future generations could be ethically acceptable in some circumstances” (emphasis theirs). But the news folks made it sound like an attempt to birth an edited baby is around the corner, or at least fully green-lighted by Nuffield.
The summary of the report reads more modestly, acknowledging that such attempts are currently banned by law most places, and that making them legal could require “a long and complex legislative pathway.” But the Council does take the view that at least some attempts, such as those to try to repair a lethal disease gene such as the dominant gene for Huntington’s disease, might be justifiable. This blog has considered such an argument in the case of sickle cell anemia—single gene defect, well understood, circumscribed attempt to repair only that gene. An argument can be made.
The Nuffield Council’s summary really is a list of general statements that, taken individually, are hard to take issue with, and are in some cases almost platitudinous. The overall impression is, “yes, heritable human gene editing could be ethical, and probably should be considered, but only after a long public deliberative process, appropriate regulation, etc., etc.” Nuffield offers two stipulations for ethically acceptable heritable human gene editing:
- “Intended to secure, and is consistent with, the welfare of a person who may be born as a consequence” of the effort, and
- Social justice and solidarity are upheld; that is, discrimination or social division should not be a consequence.
These statements are both too broad to be helpful. In the first case, the Council acknowledges that some efforts could be attempts to enhance a person’s natural characteristics, not just treat a recognized disease, and that, except for the most genetically straightforward cases, the scientific and technical challenges are substantial. In the second case, it would seem that pressures for discrimination based on social attitudes or economics (ability to pay for the procedure, medical insurance reimbursement issues) will be unavoidable.
Scientifically and socially, there will be unintended—or at least undesirable—consequences. These may be known but considered acceptable. For example, how many human embryos will need to be created and destroyed to perfect the procedure? How many generations will need to be followed to rule out some late complication? Can we really guarantee that “having babies the old-fashioned way” won’t become a thing of the past? And, in spite of the laudable desire to bring healthy children into the world, wouldn’t this be a wholesale acceptance of the basic assumption that only the people we want to be born, should be born?
For these reasons and others previously articulated on this blog, heritable human gene editing falls into a small but critical group of biomedical undertakings that should not be pursued.
And, BTW, the remaining bugs in the system include, as reported this week, that gene-editing techniques appear to introduce errors more frequently than previously appreciated. Given that heritable human editing involves more than just a few cells in a dish, a “presumption to forebear” should apply.
The TV news gave this about 5 minutes this week. That’s the breadth and depth of our “public deliberation” beyond a few experts. At the end of one segment, the host looked into the camera and said, “next up: are liberals or conservatives happier?”
As Neil Postman said: “now this…”