Genetic modification of embryos for public health!
A tale of eugenics, lack of informed consent, and media representation of the issues
I happened to open my yahoo page today and came across this article: https://www.yahoo.com/news/chinese-scientist-behind-world-first-214146405.html
It updates a story from a few years ago when a Chinese scientist modified the genomes of two embryos to “force in” a deletion that would prevent HIV infection. The timing was interesting since an ethics class recently discussed this same case, using this article as a reference: https://www.nytimes.com/2022/06/27/science/crispr-gene-editing-10-years.html (I apologize this article is behind a paywall - a copy had to be given to me).
First, let’s recap the story itself, as presented in the NY Times article. As stated above, a scientist modified the genomes of two embryos by forcing in the deletion in CCR5 that prevents HIV infection. The first key problem with this situation is that informed consent was not obtained. Not from the parents (and most definitely from the babies, who get to live with the genetic consequences for their entire lives and pass it onto their descendants. An interesting quote from the NY Times article: “Dr. Baylis of Dalhousie University criticized Dr. He for the way he reportedly presented the procedure to the parents, downplaying the radical experiment they were about to undertake. “You could not get an informed consent, unless you were saying, ‘This is pie in the sky. Nobody’s ever done it,’” she said.”
Ironically the Chinese scientist says now, in the yahoo article: “They have a normal, peaceful and undisturbed life,” He told SCMP. “This is their wish and we should respect them.” The scientist said he did not want the children to be disturbed for scientific research. “The happiness of the children and their families should come first,” he added.
That’s nice - he cares about informed consent now.
Indeed the point about genetic consequences is not conspiracy theory. The recent yahoo article says this: “However, editing errors resulted in the siblings having an entirely new version of the genes. Each was supposed to have a pair of the modified CCR5 from each parent. One of Lulu’s copies had 15 base pairs deleted, while the other remained unaltered. Meanwhile, Nana has an extra pair in one copy, while four were deleted from the other.”
Translation: There were unintended consequences of this experiment. That’s the sort of thing that could be mentioned in informed consent. Who knows what the implications are of these deletions.
This also isn’t entirely some sci-fi, Brave New World sort of idea. Embryonic screening is done for all kinds of things, including using methodology that isn’t really sound. There are geneticists that do research on the genetic underpinnings of being gay.
Let’s think about what this CCR5 gene deletion is preventing… HIV infection. You know, the thing that can be prevented through behavior. But often we find that genes have pleiotropic effects - just like the sickle cell anemia genotype also prevents malaria. So what one scientist thinks is a gesture of public health good will, might have unforeseen consequences later.
So let’s address the media side of this: the yahoo article makes no mention of the informed consent issue. The NY Times article many years ago did. What does this tell you? Does informed consent matter to the public anymore? It certainly seemed that during the COVID pandemic, informed consent didn’t matter anymore. Masks were forced on people who had respiratory conditions or previous psychological trauma and thus shouldn’t have been wearing them. People were threatened with their jobs if they didn’t get the jab… over science that this substack and plenty of others have shown is suspect. People have even suffered severe adverse effects due to these jabs. Both masks and jab mandates violate informed consent.
Ethics really do matter. Apparently the media doesn’t think so.