The Washington Post has an op-ed up right now titled: What’s the difference between genetic engineering and eugenics? I will be frank and state that it’s not the clearest op-ed in my opinion, though to be fair the writer is a generalist, not a science writer. As I quipped on Twitter, the issue with eugenics is simple: the problem is coercion, and the rest is commentary. I understand that the public is wary and skeptical of CRISPR technology and preimplanation genetic diagnosis. The problem is that the public is also suspicious of food which has DNA in it. Genes are not magic, but that is hard to convince the person on the street. Whereof one does not know, thereof one must be suspicious.
I believe for there to be a clear discussion, one needs to take coercion off the table, and abolish its specter by stating that it just isn’t an option. Then we can have a real dialogue that gets beyond the superficiality induced by the shadow of genocide. For example, consider sentences such as the following from the op-ed above “editing genes for frivolous purposes such as increasing intelligence.” There are many technical reasons that it may not be possible to increase intelligence in the near future through genetic engineering. But would increasing one’s intelligence be frivolous? I don’t think so. Whether you agree with this project or not, it is a serious matter, and gets to the heart of what we value as human beings (or at least some of us). But the specter of genocide casts a pall on exploring these nuanced questions, and that is because of the past record of coercion in eugenics.
Erika Check Hayden, a science journalist, has a much more nuanced piece in Nature, Should you edit your children’s genes? Here are some passages that jumped out at me:
In January, Ruthie’s dad Ethan asked her whether she wished that her parents had corrected the gene responsible for her blindness before she was born. Ruthie didn’t hesitate before answering — no. Would she ever consider editing the genes of her own future children to help them to see? Again, Ruthie didn’t blink — no.
The answer made Ethan Weiss, a physician–scientist at the University of California, San Francisco, think. Weiss is well aware of the rapid developments in gene-editing technologies — techniques that could, theoretically, prevent children from being born with deadly disorders or with disabilities such as Ruthie’s. And he believes that if he had had the option to edit blindness out of Ruthie’s genes before she was born, he and his wife would have jumped at the chance. But now he thinks that would have been a mistake: doing so might have erased some of the things that make Ruthie special — her determination, for instance. Last season, when Ruthie had been the worst player on her basketball team, she had decided on her own to improve, and unbeknownst to her parents had been practising at every opportunity. Changing her disability, he suspects, “would have made us and her different in a way that we would have regretted”, he says. “That’s scary.”
Sandy Sufian, a historian of medicine and disability at the University of Illinois, agrees with MacArthur that CRISPR has the potential to become widely adopted, both because of the perception that it would save money that would otherwise be spent caring for disabled people and because of people’s fear of disability. But she questions the idea that eliminating such conditions will necessarily improve human life. Sufian has cystic fibrosis, a disease caused by mutations that render her lung cells more vulnerable to infection and disease. She spends 40 hours a week inhaling medicine to clear her lungs of mucus, exercising and undergoing physical therapy; others have to quit their jobs to make sufficient time for treatments. Yet given the option to edit cystic fibrosis out of her bloodline, Sufian wouldn’t do it. “There are some great things that come from having a genetic illness,” she says.
Garland-Thomson echoes that sentiment; she has one and a half arms and six fingers because of a condition called limb-reduction disorder. She says that she values traits in herself that she may have developed as adaptations to the condition: she is very sociable and wonders if that is because she’s had to learn to work hard to make others feel comfortable around her. “Any kinds of restrictions or limitations have created the opportunity for me to develop work-arounds,” Garland-Thomson says.
The great thing about taking coercion off the table is that people can have differing opinions. We can differ as to eudaimonia. But, to not put too fine a point on it, I think the world would be fine without cystic fibrosis, even if some great things come of it. We humans are good at making lemonade out of lemons, but Mendelian diseases are definitely low hanging fruit. The people who now have cystic fibrosis are made who they are by their experience of the disease, but if I had the power of the gods I would would abolish cystic fibrosis from their past and their children’s future. You can call me abominable to admit to such a thing, but it’s true. Greatness can come out of adversity, but defeating misery is not a reason to welcome its appearance in our midst. There’s a reason the cult of flagellants isn’t particularly popular.
Yes, having a disease can alter your life. The singer Bobby Darin knew that his life expectancy was short, so he operated in a sort of frenzy when not in poor health because he wanted to accomplish something before he passed on. But with all due respect to Splish Splash, I wouldn’t be sad if Darin had lived a more sedate and relaxed life because the Sword of Damocles wasn’t always hanging over him.
There is a common saying among people in the disability-rights community: “Nothing about us without us.” People with disabilities argue that scientists, policymakers and bioethicists should take steps to ensure that the CRISPR debate reflects what is best for patients and their families, to ensure its most humane use now and for future generations.
We can disagree on what is, and isn’t, humane. I think a future with far fewer Mendelian diseases, such as cystic fibrosis, is humane. If some consider me a monster for admitting this, then bring on the monstrosity I say! In the long run I think the we’ll win the argument.