I am Art Caplan at the Division of Medical Ethics at New York University (NYU) Langone Medical Center. 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[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. Source
