Director of Emory University’s Center for Ethics; board member at the Victor Centers for Jewish Genetic Diseases
Prenatal genetic testing—which can help us identify the odds that a person might develop certain diseases—could be especially useful for Ashkenazi Jews, who have a higher-than-average likelihood of certain abnormalities. But at what cost? An ethicist on the case for modern eugenics.
Many people see the logic of genetic testing to prevent diseases. But almost nobody uses the word eugenics to describe that logic, particularly among Jews. Why do you?
It is important that people fully realize what they are doing when they choose to bring some people into the world and not others. I am not saying it is wrong; in many cases it is absolutely justified. But it is not simple. I use the word because it shocks people into taking these decisions seriously.
You’ve said that “individual eugenics” is better than state-mandated eugenics. But when leaders of a community promote genetic testing among its members, as some Jewish organizations do, doesn’t that create something bigger than individual eugenics—a eugenic culture?
We must protect that line between individual choice and group pressure. The Victor Centers promote getting tested and getting information. Then Victor steps out of the decision-making. What I worry about is the day that insurance companies will insist on screening and refuse to cover children born with genetic diseases.
The Victor Centers say their goal is “eradicating the Jewish Genetic Diseases.” But to eradicate these diseases, you’d have to screen out embryos that have a single copy of the gene (and would themselves be unaffected), not just embryos that have two copies. Should we do that?
The elimination of carriers is the most difficult aspect of genetic screening. These embryos will be healthy and will live in a world where—20 or more years from now, when they are ready to have children—screening will probably be routine, and advances in medicine may make their carrier status irrelevant. Yet most parents who use IVF would screen them out. Also, since we are not testing these embryos for other diseases, you could inadvertently choose an embryo who is destined to get Alzheimer’s or cancer. On the other hand, when someone has more embryos than they can use and must choose, I do not think it is wrong to make that decision based on carrier status.
Interbreeding would also potentially introduce other diseases into the population. But more important, the reasons Jews marry other Jews are more important to those making the decision than the risk of genetic diseases, especially now that science can detect them. In the Orthodox community, programs like Dor Yeshorim screen partners before dating so that they can choose mates from within the Jewish community who do not carry the same disease gene. So there are other solutions to these challenges.
Illustration: Anje Jager