Gene editing in human embryos: What women are (not) informed about in consent forms

When research poses health risks to research participants, it is important to make sure there is necessity and acceptability of that research. However, for germline gene editing, there is no clear medical need. In a recent paper in the CRISPR journal, Emilia Niemiec and Heidi C. Howard argue that this raises questions about undue incentives to participate in research. 

Egg donors need to take risks to make research on gene editing of germline cells in humans possible. In some cases, these women are highly compensated to donate their eggs. The problem is that sometimes, they are not getting enough information about the procedure and the risks it entails.

The authors have looked at consent forms used in a widely publicised study where human germline gene editing was used to correct a disease-causing genetic mutation in human embryos. In their analysis, Emilia Niemiec and Heidi C. Howard show that the information provided for both egg and sperm donors was insufficient. The forms contained limited and potentially even misleading information about the sensitive nature of gene editing in human embryos. Moreover, that there was no explicit mention that the donor’s genome would be sequenced. In addition, the researchers did readability testing of the forms, indicating that the information is also difficult to understand.

In this particular case, women were paid USD 5,000 to donate their eggs. According to the authors, this alone raises ethical issues about the incentives they had to participate. Given the high amount, the risk is that some of the women might participate for financial reasons. For the future, the authors ask for reflection on whether this kind of research should be pursued.

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By Anna Holm & Josepine Fernow