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Tornyenu was born with sickle cell disease. Sudden cold drafts constricted her blood vessels, causing a pile-up of red blood cells. Bent into crescent shapes as the result of a genetic mutation, they choked her tissues of oxygen and sent waves of excruciating pain through her body. Despite the precautions she took and the medications her doctors prescribed, Tornyenu still missed 100 days of high school due to these pain crises.
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During her freshman year of college, she learned about a clinical trial of an experimental technology called CRISPR that could edit the DNA of blood-forming cells so they would no longer twist into a sickle shape and wreak havoc on her organs. There was just one catch: To make room for those edited cells, she would have to receive chemotherapy. Those toxins wouldn’t just kill the defective blood stem cells in her bone marrow, they would also wipe out other rapidly dividing cells — including the cells in her ovaries that give rise to eggs. Her doctors told her that the risks of chemotherapy leaving her sterile were high.
Tornyenu, then just 19 years old, felt torn between the hope of being pain-free and the despair of losing something she’d always wanted — a family of her own. But the allure of a potential cure eventually overcame her doubts. On December 28, 2021, doctors at Children’s Hospital of Philadelphia pushed millions of Tornyenu’s cells — each containing a genetic edit — through an IV line and into her arm. She hasn’t had a pain crisis since. Two years later, she is virtually sickle-cell free.
How is this a conundrum? If you have a debilitating genetic disease, why would you have kids and risk dooming them to the same poor quality of life you suffer from? Choosing the treatment seems like a no-brainer.
While true, it might be seen as eugenics due to the group of people that is mostly struggling with sickle cell anemia.
It is perfectly valid to wait for treatment that won’t cause that complication. Once that treatment exists it is also fair to assume the children, if affected, would receive the same care.
If it wasn’t for the chemotherapy, the reproductive organs would be similarly updated to the new code.
The only way this comes even close to being eugenics-like is due to the chemotherapy requirement. And since it is (currently) a medical requirement for treatment success, with no intentional sterilization intent behind it at all (it’s just an unfortunate side effect), this does not trip the threshold for eugenics whatsoever.
Future treatments could possibly achieve the same effect without sterilization.
it seems like sickle cell anemia will be quite curable soon
you need two broken copies of the gene to get the disease, so as long as you know the partner doesn’t have a copy, the kids will be fine. even if your partner has one copy, you can use IVF to make sure the kids only end up with one copy.
the kids can then use IVF to have 100% healthy kids themselves
IVF is not a miracle solution. It comes with its own risks and is very expensive.
That’s a fairly cold and callous question. People aren’t logical creatures, and 19 is really young to be making that sort of decision. Sickle cell is survivable, not to mention recessive, and many people dream of having children well before they can or should.