The UK agency that regulates assisted reproduction announced in a March 20 press statement that it has found “broad public support” for procedures that would modify the genes of future generations. But a closer look at its report shows something quite different.
The Human Fertilisation and Embryology Authority (HFEA)'s report described a public consultation that it undertook to "take the public temperature" on an "important and emotive issue." The issue in question is whether human trials should be conducted on mitochondria replacement techniques that would constitute a form of inheritable genetic modification.
Mitochondria are tiny organelles that power all animal and plant cells, and have their own DNA, known as mtDNA. Women affected by mitochondrial disease are at risk of passing it on to their children (mtDNA is inherited only from mothers). One way around that would theoretically be to replace the mtDNA in a woman's egg with healthy mtDNA from another woman, creating what are popularly known as "three-parent babies." The techniques involved, described in more detail here, are being developed in Newcastle, UK (hence the HFEA interest), and in Oregon and New York.
But a very large ethical and social issue looms over these procedures. As Marcy Darnovsky explains in the Center for Genetics and Society's press release,
Changing the genes we pass on to our children is a bright ethical line that should not be crossed. It has been observed by scientists around the world, adopted as law by more than 40 countries, and incorporated in several international treaties.
It would be wrong for the UK to disregard this global bioethical consensus, especially when there are safe alternatives available for the very few people who would be candidates for the procedures.
The implications of crossing that line were spelled out vividly in a response to the HFEA announcement by David King of Human Genetics Alert:
Historians of the future will point to this as the moment when technocrats crossed the crucial line, the decision that led inexorably to the disaster of genetically engineered babies and consumer eugenics. This was the moment at which they casually tossed the bioethical consensus of the last 30 years into the trash.
The HFEA consultation process involved several different approaches. By far the largest number of people involved took part in the on-line open consultation questionnaire, which gathered 1836 responses. Of those, 1260 came from individuals or organizations who filled in the questionnaire on-line. (Details are in Annex IV of the report.) There were also 569 letters and e-mails, 503 of which had responses not tied into the particular questions asked.
Question 1 asked for views on "offering (one or both of) these techniques to people at risk of passing on mitochondrial disease to their child" and received 1235 responses. Of those, "349 state that they consider both acceptable, while 106 agree but with some caveats, but 502 say they are not acceptable." In addition, "some 300" of the "503 non-questionnaire responses" state that they do not think either of the techniques are acceptable.
To state this more clearly: The majority disagree with the introduction of both mitochondria replacement techniques.
Question 5 reiterates this public disapproval. It asks, "If the law changed to allow mitochondria replacement to take place in a specialist clinic regulated by the HFEA, how should decisions be made on who can access this treatment?" and offers several alternatives. By far the most popular choice (551 out of 1,143) was "4) I do not think mitochondria replacement should be permitted in treatment at all." In addition, "many" of the 55 who chose the tightest regulation opposed the procedure but selected a second-best option "as it offered the most intensive regulation of the treatment." And "others [who did not select an option] simply reiterated their opposition to mitochondria replacement."
Why, then, is the HFEA misrepresenting its own data to claim the public's "broad support"? Perhaps it is placing more import on the other four "strands" of the public engagement project. These included deliberative public workshops where thirty people were recruited to meet twice in Newcastle, Cardiff and London; a public opinion survey; two open consultation meetings that in total included 92 participants and had a pre-selected panel of speakers; and a patient focus group with six participants. The sentiment in these strands tended to be more in favor of the techniques, but was still mixed and varied considerably.
Some of the work in these aspects is problematic, too. The public opinion survey involved 979 interviews with random members of the UK public who were likely to have low knowledge of the issues involved, and was designed to start with generalities about science and research and only then proceed to "the more ethically challenging subjects." (That's a classic way to design polls to obtain the result you want.) The later discussion groups actually dropped a reference to one study that had caused uncertainty and concern among earlier participants, on the grounds that its relevance was tangential; the report noted that "for some participants their trust in the safety of these techniques is relatively fragile, and easily disrupted by new information."
But reporting such uncertainty would, of course, dilute the message that HFEA is sending to the UK Department of Health, which must now decide whether to draft regulations to allow the procedure. If they do, the proposals would then need the approval of both houses of Parliament. And it is quite clear what the HFEA's recommendation is. Prof Lisa Jardine, who chairs the HFEA, told the BBC that the UK was in one of the most advanced positions in the world:
"Other countries are astounded that we're this far on in the discussions," she said.
Clearly this report is meant to "advance" rather than simply document public reaction. The picture of "public support" that the HFEA is now painting is misleading at best.
Unfortunately, every major news outlet took the bait. The majority of articles about the HFEA announcement reference "widespread public support" either right in the title or near the lead. Titles included "UK: Public OK with creating babies from 3 people" from the Associated Press (widely reprinted) and "'Three parent babies' one step closer: survey reveals support for radical IVF therapy" from the London Independent.
Let us hope that the Department of Health reads the report more carefully.
Previously on Biopolitical Times:
Posted in Assisted Reproduction, Inheritable Genetic Modification, Jessica Cussins's Blog Posts, Media Coverage, Pete Shanks's Blog Posts, The United Kingdom
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