When ethics intersect with reality

I had not heard of this case before and have no strong view.  But it is a great case for questioning one's own logic and reasoning.  

From When Genomics Meets Eugenics by Robert F. Graboyes.  The subheading is Dor Yeshorim and the Shadowlands of Medical Ethics.  

In health, ethics and economics often intertwine like DNA’s twin helices. Genomic technologies will likely transfigure the economics of healthcare, and ethicists will struggle to maintain a coherent framework of morality around the innovations.

A well-versed reader noted that I often write on eugenics and its present-day echoes and wondered how these writings play among people of faith. I responded that, over the years, my students have included religious Christians, Jews, Muslims, Hindus, Buddhists, and others—and that their religious perspectives on eugenics always enriched the discussions in my classes. I also mentioned that I’m in the middle of reading a book, Preaching Eugenics: Religious Leaders and the American Eugenics Movement, by Christine Rosen. Finally, I mentioned an article that I wrote on the topic five years ago. This essay is a modest reworking of that piece.

Dor Yeshorim (דור ישרים) is an organization whose name comes from Psalm 112:2, and whose name means “upright generation.” After centuries of close quarters and endogamous marriage, a significant percentage of Jewish people of Northern European descent—“Ashkenazim”—carry genes associated with serious illnesses. (I am a product of those communities.) Perhaps the worst of these illnesses is infantile Tay-Sachs, a disorder that slowly shuts down a seemingly normal baby’s nervous system. Described by Christine Rosen in a 2003 article:

It begins innocuously enough. A six-month-old baby, once thriving and cheerful, begins reacting differently to normal sounds such as clapping hands or closing doors. Her parents notice that her limbs twitch and her muscles are not developing properly. She has trouble swallowing and shows signs of mental retardation. What they can’t see is her compromised brain tissue, which began degenerating when she was still in her mother’s womb. Soon their once-healthy child is in the grips of an overwhelming illness. As the deterioration intensifies, fatty deposits overwhelm the nerve cells in her brain, and she experiences seizures and paralysis. Bright cherry red spots appear on the retinas of her eyes, and she is rendered blind. Their daughter lapses into a vegetative state, and by the age of 3 or 4, she is dead, often of complications from pneumonia.

One of every 30 Ashkenazi Jews carries the Tay-Sachs gene. The disorder is autosomal recessive, meaning symptoms only present if the child inherits the gene from both parents — a 1-in-4 chance if both parents are carriers. So, in a random marriage between two Ashkenazim, each child has a 1-in-3,600 (1/30 x 1/30 x 1/4) chance of developing Tay-Sachs. This is the essence of the chart at the start of this essay.

In the deeply religious “Ultra-Orthodox” communities, concentrated in Brooklyn and Israel, marriages are still arranged by matchmakers (“shadchanim”), based on multiple criteria. For 40 years, an organization called Dor Yeshorim has tested almost all children in these communities for a panel of genetic disorders that includes Bloom syndrome, Canavan disease, Cystic fibrosis, Familial dysautonomia, Fanconi anemia (type C), Glycogen storage disease (type 1), Mucolipidosis type IV, Niemann–Pick disease, Spinal muscular atrophy, and Tay–Sachs. Tests for additional Ashkenazic diseases are available, as well as tests for genetic problems among Mediterranean (“Sephardic”) Jews.

Test results go into a database, with children identified only by personal identification numbers. To avoid stigmatization, those tested aren’t told whether they carry any problem genes. When a couple considers marriage, they exchange PINs and birthdates, so each can enter both in the Dor Yeshorim database and learn whether they share any of the problem genes. If they do, then marriage is deemed unadvisable. For the sake of privacy, Dor Yeshorim employees have no knowledge of who tests positive for any of the conditions, unless one or both seek genetic counseling from the organization.

For 40 years, Dor Yeshorim has enabled these communities to experience near-total success in preventing these illnesses. The practice, however, is controversial, because, among other things, some critics worry that it is a step in the direction of eugenics. The late Rabbi Moshe Dovid Tendler, professor of biology and expert in medical ethics at Yeshiva University, was a prominent critic of the program. He saw the program as “affirming eugenics” and said:

This is what happens when you have people with no scientific orientation who want to do good. The question arises, when do you stop? There are close to 90 genes you wouldn’t want to have. Will this lead to people showing each other computer print outs of their genetic conditions? We’ll never get married.

Eugenics sought to extend the selective breeding of agriculture and animal husbandry to human beings. The idea was that, armed with genetic data, we could breed superior human beings and eliminate problematic offspring.

A toxic blend of eugenics and cost-benefit analysis provided the logical underpinnings for the infamous Supreme Court case Buck v. Bell — which green-lit forcible sterilizations of tens of thousands of Americans. At its most extreme, eugenics handed the Nazis a scientific veneer to plaster over their mass extermination of millions. Nazi deputy leader Rudolf Hess declared, “National Socialism is nothing but applied biology.”

The debate over Dor Yeshorim has at times been intense among Jewish ethicists. After all, the Ultra-Orthodox communities that participate in the program are mostly descendants of those murdered because the Nazis judged them to be genetically undesirable.

The questions asked by Tendler and others is: Is Dor Yeshorim practicing an updated form of eugenics? If so, is that justifiable, given their families’ grim history in Europe? Answers don’t come easily. For the community involved, the absence of state coercion is a critical difference between then and now. To critics, that’s not enough.

There is more to the essay and it is worth reading.

The goals may be admirable and desirable (reduce human suffering) but are the means, even if consented to and endorsed, ethical?  

 Graboyes ends with 

Ultimately, the biggest question, and the most difficult to answer, is: Will future generations view our practices and our answers more charitably than we view the eugenicists’ illicit science?

I understand that he is really pointing towards the question: Were we not in the midst of this debate, with a stake in the debate, would we reach a different conclusion?

But his wording can be interpreted to be asking whether the future will approve of our decisions, drawing a parallel with out present condemnation of various former cultural, policy, or practical norms of the past?  

While I think the latter is a bad take, it is still an interesting one.

We have legions of ignoramuses running running about ethically but anachronistically second-guessing past cultural, policy, or practical norms without understanding history, context or trade-offs of the time.  It is among the worst forms of public display moral preening by the truly vacuous.  

Every painting, song, poem, or artwork cancelled, every book censored, every play suppressed, every statue pulled down and mural covered up is done by the native authoritarian under the guise of moral purity based on their hypothesized sensitivity to some past event which they barely comprehend.  

What will future generations think about our current practices?  Who cares?  What should we think about their possible future actions?  It is an exercise in needless and unproductive speculation.  It's barest, but not negligible, redeeming value is that the question forces us to answer something slightly different.  What is the strongest argument against the conclusion which we are reaching?

Ultimately, all we can do is make the best, and most considered, decision we can, through the most thorough investigation of facts and interpretations we can under the present circumstances.  Because we are constrained by limited time, resources, and ignorance, our decision is almost always going to be less than optimal, no matter how rigorous we are, and will always be able to be called into question by those in the future with more knowledge, experience, time for consideration and resources to support the debate.