Posted on February 15, 2017 at 7:50 PM
Yesterday the National Academy of Sciences and the National Academy of Medicine release the findings of an expert panel on Human Genome Editing. The most significant of their recommendations relate to human germline genetic editing. They recognize that the techniques for doing this are not yet at the point that they can be considered safe enough to do at the present, but make the assumption that the short term safety issues are technical problems that can and will be solved in the not too distant future. With that in mind they recommend in the summary report that “germline editing research trials might be permitted, but only after much more research to meet appropriate risk/benefit standards for authorizing clinical trials. Even then, germline editing should only be permitted for compelling reasons and under strict oversight.”
I would like to think about what it means to have compelling reasons to do human germline genetic editing. Elsewhere in the summary report the committee says “Editing germline cells could reduce the burden of inherited disease for a child and allow prospective parents who carry known disease-causing mutations to have genetically related offspring without the risk of passing mutations to their children.” It seems to me that this is what they are referring to as compelling reasons. They appear to be saying that this type of genetic modification would be permissible if it were being done to allow a couple who carry genes for a serious genetic disease to have a child who does not have that disease. They imply that this would relieve a child from the burden of having that disease. But is that really what would be done?
The choice to use germline genetic modification to create a child who does not have a specific genetic disorder is made before the child exists. It is quite possible to avoid having a child with the disorder by not having a child at all. The desire to care for a child can be met by adopting a child who already exists and is in need of care. It is the desire to have a specific type of child whose characteristics can be determined by the parents that drives germline genetic modification, but that is not compelling in the way that treating an already existing child and relieving the suffering of that particular child is compelling. By using germline genetic modification the parents would be creating a child who is exposed to risks that cannot be known until generations after that child’s birth. That might be permissible if it were the only way to treat the disease of a child who already existed, but when it is for the purpose of fulfilling the desires of the parents at the possible expense of the child then it is not permissible, let alone compelling.