"Should the possibility of inadvertent gene transfer to the germline be considered a benefit or risk?"

Posted by Jesse Reynolds March 21, 2007
Biopolitical Times
Researchers in the UK are working towards gene "therapy" on human fetuses. Although the technique holds potential for treatments of serious genetic conditions, it raises both ethical and safety concerns.

The still-experimental procedure, more accurately called medical gene transfer, modifies the genes of human body cells, while trying to avoid the reproductive cells. This is done in order to treat a genetic condition while preventing the genetic modification from being inheritable. But the likelihood of modifying the reproductive cells is much greater when working with a fetus.

This debate played out in the US almost ten years ago , when W. French Anderson, one of the leading researchers in the area at the time, proposed the in utero technique to the NIH's Recombinant DNA Advisory Committee (RAC) . He explicitly acknowledged the possibility of crossing the germline barrier: "Should the possibility of inadvertent gene transfer to the germline be considered a benefit or risk?" He was clearly trying to force the hand of RAC, and in his words - to "push the envelope." Would the RAC approve inheritable genetic modification, if it came in a disguise? And even if the reproductive cells are not inadvertently modified, the approval of genetic modification to earlier and earlier stages of development sets the stage for the acceptance of inheritable genetic modification by both regulatory agencies and the public.

At the time, Paul Billings of the Council for Responsible Genetics offered a strong argument against Anderson's proposal:
So far, human gene therapy has failed, and it seems paradoxical that this failure should be used as a justification to extend genetic manipulation in humans to less-differentiated cells and the germline (particularly given that the Recombinant DNA Advisory Committee (RAC) of the National Institutes of Health (NIH) only allowed consideration of somatic intervention if germline tampering was banned)....

It would be a poor public policy decision if full patienthood was conferred on the more than 85% of conceptuses and fetuses that do not survive the normal gestation period or experience early neonatal death. Treatment of generally non-viable fetuses, even with powerful genetic methods and parental permission, should be avoided. Making young fetuses into patients only serves to confuse compassion with eugenics.
And given how little success there's been in the field since, this argument still holds up.