I have been following the reports about genetic editing technology with concern. The fact that some scientists are calling for moratoria on gene editing of human embryos heartens me. Frankly, I had little confidence that any group of scientists could bring themselves to call for limits on research. The call for a moratorium is as much a game changer as the technology itself. It creates an opportunity for research transparency and open exchange between the scientific community and the lay public. Germline modification raises a wide range of scientific, social and ethical issues that we have only begun to consider. The call for a moratorium puts those issues front and center and, if implemented, gives us valuable time for consideration.
In the meantime, as Paul Knoepfler has pointed out, we need is a practical plan for proceeding. His ABCD plan proposes use of SCROs for approval and oversight of in vitro research. The use of existing oversight mechanisms makes sense, although in practice, both IRB and SCRO review is only as rigorous as local institutional culture allows. SCRO review is a decentralized oversight mechanism through which research standards are subject to variable interpretation. However, as Knoepfler points out, SCROs are already in place.
As a bioethics scholar and teacher, I find the bioethics training appealing, fascinating, and daunting, given the wide range of potential issues. I’m glad to see that Knoepfler has flagged sourcing of human oocytes as one issue. In the fertility context, human oocyctes are procured through a largely unregulated and rapidly expanding market. The process of soliciting young women to provide oocytes for others’ use is often degrading and expresses eugenic ideals. (See my recent blogpost here). Federal guidelines and a few state laws prohibit payment to research donors. But I worry that the notion of free market individualism used to explain treating women as sources of raw materials and exposing healthy young women to the risks of ovarian stimulation and oocyte retrieval is being used in research, as well. Do we really want to superimpose market thinking on human beings, in the name of science?
I would hope that bioethics training would take the concerns of disability rights activists seriously. Genetic modification is a form of genetic selection. We have a long, bad history of mis-using human genetic selection. Genetic selection technology use can, and probably will, expand the list of conditions and traits considered undesirable. As the list expands, so will the therapeutic justification for genetic modification. The most important concern is that as the list expands, acceptance of persons with disabilities will narrow. The Americans with Disabilities Act has effected important legal and social changes for people with disabilities, and the Genetic Information Nondiscrimination Act provides some protection against genetic discrimination. But neither limits the use of genetic selection. While this concern applies most obviously to in vivo research, it starts with in vitro research agendas.