Deleting the ethics gene
January 18, 2019
Leading scientists worldwide have strongly objected to an unauthorized and premature effort to produce “designer babies” in China. I agree with their objections. But I also find some of their own proposals inadequate and even objectionable.
The background: In late November, Chinese researcher He Jiankui revealed that he had altered the genetic makeup of human embryos produced in the laboratory from the gametes of seven couples. In each case, the husband was HIV-positive (carrying the virus that causes AIDS) while the wife was not.
Dr. He sought to delete part of a gene called CCR5 that is normally found in human beings, based on evidence that people who lack this gene have a greater resistance to the virus. So far, only one woman has carried to term, giving birth to twin girls named Lulu and Nana – and it may be only Nana’s genome that was altered enough to provide resistance to HIV.
By altering genes at the early embryonic stage, Dr. He conducted “germline” gene editing. Such alterations can change every cell in the grown human body, including reproductive cells, and so create permanent changes in the future makeup of the human race.
The consequences of such experiments are so far-reaching and potentially disastrous that science academies in the U.S., Great Britain and China have called for a moratorium on pursuing them until more research is done, risks are assessed and a societal consensus is formed.
Dr. He violated this consensus, the ethical standards of his university and perhaps Chinese law. In The Atlantic, science writer Ed Yong cites 15 problems with this experiment.
Among other things, Dr. He skipped over the animal and human studies others see as essential before taking this radical step.
This trial did not correct a defective gene to cure or prevent a horrible disease, but disabled a normal gene to improve resistance to a disease that these children did not have and may never be exposed to – in the process, perhaps increasing their vulnerability to West Nile virus and to dying from the flu.
It imposed unknown risks on innocent children not able to give consent, using them as guinea pigs in the hope of someday benefiting others.
All these objections are valid. But leading scientists’ proposals for what should be done instead, and how it should be done, raise problems as well.
First, they want to do what Dr. He has done but more slowly and carefully, knowing that one disaster now may publicly discredit germline editing for a long time.
The organizing committee of the Second International Summit on Human Genome Editing reacted to his research by reiterating that “any clinical use of germline editing remains irresponsible at this time” (emphasis added) – but “it is time to define a rigorous, responsible translational pathway toward such trials.”
These scientists hope to carry society gradually toward accepting “designer babies,” after establishing that it can be done safely.
Second, they hope to establish this by conducting numerous trials in which human embryos are genetically modified, studied and destroyed. In the meantime, no human being in these trials should be allowed to be born alive.
Or as one news headline has declared, “Editing human embryos is OK – but don’t turn them into people yet, geneticists say.” Those of us who realize that people are already people at every stage of their existence will have problems with this.
If the latest dispute shows anything, it is that the scientific community is unable or unwilling to regulate itself effectively – and that its standards for what needs regulating may themselves be faulty. We all need to be part of this conversation.
Doerflinger worked for 36 years in the Secretariat of Pro-Life Activities of the U.S. Conference of Catholic Bishops. He writes from Washington state.