Rogue Science Strikes Again: The Case of the First Gene-Edited Babies – Astute News
A further failing of He’s experiment was the consent process. The study recruited couples with an HIV-positive husband and HIV-negative wife. Ostensibly, the couples had a particular interest in ensuring their children never contracted HIV, in light of the intended father’s experience. 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.