Russian HuGE Pioneers

Russia has some of the most open laws regarding assisted reproduction. The country allows commercial surrogacy, PGD (preimplantation genetic diagnosis, used in IVF to identify genetic defects in embryos), dual donor IVF, and single/gay/unmarried intended parents. Full package services run about $70,000 USD. Other countries do not allow some, part or all of the above products (hence IVF tourism is a thing). Some states in the USA allow all of the above, including Illinois, but typically at double the price (comparative quality is unknown by Eugene).

So perhaps it shouldn’t come as a surprise that Russia is the second country (behind China) to openly discuss scientists and HuGE (human genetic engineering), as discussed in the NewScientist article linked here in which five deaf couples want to use CRISPR gene editing to have hearing children. Let’s examine some of the arguments made by the doctor hoping to perform the gene edits.

“In western Siberia, many people have a missing DNA letter in position 35 of the GJB2 gene.” Based on the linked research provided by the article, that sounds about right. In Mendelian terms, both parents have a recessive mutation that leads to the ear not forming correctly. They don’t want a deaf child. Prior to gene editing, their only option was to use egg or sperm donation. Now, they can let a doctor attempt to insert the missing letter in the guy’s sperm and directly implant (using ICSI, an IVF technique) that sperm, or however he intends on doing it (IVF doctors are typically tight-lipped).

Is there a chance he screws it up? He accidentally edits another gene instead? This risk seems insignificant in that all humans have some mutation load and some kind of genetic diseases, and each time we reproduce we add mutations to our children (estimates vary but some guesses say on the order of 50 mutations).

The article presents two ethical standards: “a compelling medical need” and “an absence of reasonable alternatives.” If those are the standards, there is never a case for HuGE. Not only is there no compelling medical need to have children, there is even less necessity that you have children with similar facial features; adoption and donor IVF are always reasonable alternatives.

The next standard is “preventing more serious genetic disorders.” PGD has already solved this problem, and for those who are religiously against embryo destruction, HuGE is the solution. Plus, as said by the doctor quoted in the article, serious genetic disorders often lead to children who don’t have children (most parents like me want their children to have children). The HuGE in demand is always going to center around the less lethal conditions. Still, how is this an argument? People buy clothes they don’t need. Is there a standard “clothes must only be bought so people survive”? We should all limit our economic activity to mere survival, according to this argument.

What the article fails to address fully is the parents. They want children together, and they don’t want a deaf child. If we have compassion for these parents, the only ethical standard that matters is whether the doctor’s medical claims are any good. The parties involved all are willing, and we can assume informed consent since the doctor is quite public about his intentions. “Deafness” is a valid disorder not by virtue of vague claims of seriousness, but by the existence of willing parents who don’t want their children to be deaf.

One last argument: “If germline gene-editing is one day shown to be safe, Savulescu [the doctor] thinks there would then be a moral imperative to use it to prevent conditions such as deafness.” This is incorrect. HuGE has no moral imperative. There are only intended parents who want children with less health problems. What is the single most important thing in life? Health. Your health is everything. Parents want healthy children. These parents don’t want their children to be deaf. How is this our business? I have restless leg syndrome, red-green color blindness, and a rare (1 in a 100) disorder in my spine that forced me to have back surgery at 48. I’m afraid I passed these traits on to my children. They all really suck. If I could have paid to prevent these traits being passed down via HuGE, I would have and wouldn’t care what others thought about the various ethical arguments presented in this article. I would instead sleep better at night. “Compelling” and “serious disorders” are the arguments of someone telling me how to live my life. It is someone who doesn’t suffer from restless leg syndrome, red-green color blindness, and a (once) very painful back problem.

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