The controversial case of a rogue scientist responsible for the world’s the first gene-edited babies | Alternet
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Public perception
This backlash may have caught He by surprise. According to one report, He commissioned a large-scale public opinion survey in China a few months prior to the announcement. The survey found that over 70 percent of the Chinese public was supportive of using gene editing for HIV prevention. This is roughly in line with a recent Pew poll in the United States that found 60 percent of Americans support using gene editing on babies to reduce lifetime risk of contracting certain diseases.
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But polling tells only part of the story. The same Chinese poll also found very low levels of public understanding of gene editing and did not mention the details of He’s study. Abstract polling questions ignore the risks and state of the science, which were crucial to most objections to He’s experiment. It also obscures the involvement of embryos in gene editing. In the American Pew poll, despite overall support for gene editing, 65 percent opposed embryonic testing – a necessary step in the process of gene editing to address disease.
Moreover, polling is a crude and simplistic way to engage in public debate and deliberation over the controversial issue of gene editing. Various bodies, such as the National Academies of Sciences, Medicine and Engineering in the U.S. and the Nuffield Council on Bioethics in the U.K., have emphasized that, for gene editing to proceed to human trials, a robust public discussion is first needed to establish its legitimacy.
But looking a little closer reveals other, more problematic motivations.
For such couples, it is possible to safely conceive an HIV-negative child using robust IVF procedures. Such therapy is expensive, prohibitively so for many couples. But He’s study offered a particularly enticing carrot – free IVF treatment and supportive care, along with a daily allowance and insurance coverage during the treatment and pregnancy. According to the consent form, the total value of treatments and payments was approximately US$40,000 – over four times the average annual wage in urban China.
This raises a serious concern of undue inducement: paying research participants such a large sum that it distorts their assessment of the risks and benefits. In this gene editing context, where the risks are incredibly uncertain and there is substantially limited general understanding of genetics and gene editing, society should be especially concerned about the distorting effect of such a large reward on the participants’ provision of free and informed consent.
