SMCMA Physician

Gene-Edited Babies: Breakthrough or ‘Morally Irresponsible’?

The news has broken about one of the most significant experiments ever undertaken in the history of human genetics: an attempt to alter genes in a human embryo. A Chinese scientist reported that he had done so in at least two girls who have now been born and he says that more children may be on the way. He used the new technique CRISPR, which basically involves snipping genes out or inserting genes. It’s kind of like a scissors that can be used to alter the genetics in a body cell or, in the case of human embryos, in the embryonic cell itself. The reason I say that this experiment is hugely significant is because it’s the first known attempt to try to alter genetic material that will be passed on to future generations. It’s not the same as gene therapy, where you try to change genes in the cells of the body.

Some people are hailing this as a landmark achievement and a great breakthrough. Other critics, like [Medscape Editor-in-Chief] Eric Topol in the New York Times, have said that this is not a good thing to do and it’s premature. I think it’s one of the most amazing experiments ever seen and stupendously immoral.

This work was done without the consensus of the scientific community that CRISPR is safe enough to alter genes in embryos. There have been a few experiments in human embryos in dishes and some experiments in animal embryos. But we are far from knowing whether we can accurately target a particular set of genes and change, delete, or alter them without other changes taking place in other parts of the genome. Were that to happen, you could get birth defects, premature aging, and all manner of sickness and illness occurring in the children. When it comes to something like germline genetic engineering, safety [should come] first. That has been violated and ignored here.

Second, the experiment is grandstanding. All of the announcements from China have come via YouTube and press conferences. That is no way to do momentous scientific research. Nothing can be validated. No one knows what methods were used. No one can assess the data. There is no way to track what really was done, and that is completely morally irresponsible.

Worse, the researcher says that he spent 2 hours with the women who were going to have their embryos altered, getting their informed consent. This researcher has applied for patents and he is running a fertility clinic where people are drawn to spend a lot of money to perhaps alter their children’s genes. In this case, the goal of the alteration was to try to get more resistance to HIV. Apparently, the women’s husbands were infected with HIV, so they were looking for some way to prevent transmission to the children. But the goal, in a sense, does not matter. Explaining this in 2 hours by a person who has conflicts of interest, who is making money trying to become first in line [in this area] and promoting a patented technique, is not informed consent. It’s bamboozlement.

You need an independent investigational review board to get the informed consent. You would need to give these women and their partners plenty of time to think about whether they wanted to do this, not dump it on them in a 2-hour event. This is a mockery of informed consent and inappropriate to the level of experiment that is being tried here. It’s unclear whether the institution where this was done was aware that it was being done. A number of scientists in China have come out condemning this. The institution says that it is going to go after the researcher and punish him for this renegade science.

I’m not against germline genetic engineering. I think repairing diseases like sickle cell, Huntington’s disease, or hemophilia is a great application of the technique—but only once it’s proven safe and reliable, and in the hands of people known to be competent at handling engineering in something like an embryo. That is years away. It’s going to come. I hope it comes quickly.

Renegade science like this offends both basic principles of human experimentation and scientific consensus about safety. It endangers the field; this experiment could set back germline engineering rather than advance it as people react with prohibitions or withdraw funds.

Some people see Professor He, who did this experiment in China, and his team, as heroes. I see them as villains. I think they have done something hugely immoral and threatening to the future of important science, and they set a horrible example for anyone interested in trying to undertake pioneering research in the realm of genetics.

Artur L. Kaplan, PhD is the Drs. William F and Virginia Connolly Mitty Professor and founding head of the Division of Medical Ethics at NYU School of Medicine in New York City.

Reprinted with permission: Arthur L. Caplan. Gene-Edited Babies: Breakthrough or ‘Morally Irresponsible’? - Medscape - Dec 05, 2018