Undiscussed issues in the debate over human germline genetic modification

Jon Holmlund’s 12/10 post on the use of somatic cell gene modification to treat sickle cell disease and two recent articles in The Telegraph have me thinking about human germline genetic modification again. One of the points in Jon’s post was that somatic cell genetic modification does not have the ethical problems of germ line genetic modification. The Telegraph articles discuss a group that has proposed a global ban on the genetic modification of human embryos and the views of the British government’s Chief Scientific Adviser, Sir Mark Walport, who advocates for Britain being at the forefront of this research.

While there are safety concerns with somatic cell genetic modification as with all new medical technology most agree that there are unique concerns with germline genetic modification. The group supporting the “Open Letter on Reproductive Human Germline Modification” focuses on the concern that this technique “could irrevocably alter the nature of the human species and society” in addition to safety concerns. Much of their focus is on the likelihood that the use of germline genetic modification would lead to a biological divide between the rich who could afford genetic modification and the poor who could not.

Walport takes the view that decisions about whether it is right to use human germline genetic modification are risk/benefit decisions and downplays ethical concerns other than safety. He is quoted as saying it was important to think about genetic engineering in a “sensible way” which involved “careful discussion and debate”’ of both scientific and ethical issues. “We shouldn’t think about technologies in a generic way. Is it a good or a bad thing,” he said. “There are potentially good uses and there are potentially abuses.” His consequential thinking excludes the possibility that there is anything inherently wrong with human germline genetic modification or the experimentation on human embryos required to develop this technique that he is supporting. It also assumes that modifying embryos so that parents who carry a genetic disorder can have biologically related children who do not have the disease they carry outweighs the potential harms.

While concerns about safety and concerns about social impact and inequality are valid, there some things that are being missed in the public debate. One is the issue of experimentation on human embryos. The request for permission by the Francis Crick Institute in London to do genetic modification experiments on human embryos in spite of the previous British ban on such research includes the stipulation that the embryos will be killed by 14 days after conception. These human embryos are being experimented on and destroyed with no benefit to themselves. This makes the research itself wrong no matter what benefit could possibly result from the research.

Another is the nature of the potential benefit of this technique. Sometimes it is expressed as having the potential to rid the human race of serious genetic diseases. That really is not true. Even if it would be amazingly successful it would only be able to allow parents who are carriers of a genetic disease and have the resources to know that they are carriers and the resources to undergo expensive reproductive technology to have a child who does not have that specific disease and who would not pass on that disease to his or her offspring. The disease would still be passed on by parents who did not know they were carriers or who did not have the resources to do this type of technology. That would not eliminate the disease from the human race. It is all about the reproductive “rights” of affluent parents and the profit that can be made by the reproductive technology industry in catering to their desires.

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Jon Holmlund
Jon Holmlund
4 years ago

I appreciate the points. I believe that gene editing at the embryo stage is not identical to germline editing. Specifically, one can imagine editing of unfertilized gametes, in an attempt to “edit out” an undesirable genotype from the future descendents of the people involved. This raises the issues of permanent genetic changes, risks to resulting progeny in the next or subsequent generations, and the concern that people are being turned into engineering projects at a fundamental level. But destruction or risk to an actual nascent human life, at the time of the editing procedure, would not be incurred. Perhaps it’s an excessive parsing of terms. In any event, I’m not ready to welcome human germline editing or gene editing of human embryos.