This is very, very good. Gonna make a thread with some quotes and thoughts. https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/

"The decisions parents make after prenatal testing are private and individual ones. But when the decisions so overwhelmingly swing one way—to abort—it does seem to reflect something more: an entire society’s judgment about the lives of people with Down syndrome." (2/?)

"In wealthy countries, it seems to be at once the best and the worst time for Down syndrome. Better health care has more than doubled life expectancy. Better access to education means most children with Down syndrome will learn to read and write..." (3/?)

"...Few people speak publicly about wanting to “eliminate” Down syndrome. Yet individual choices are adding up to something very close to that." (4/?)

A charming quote from a genetic counselor: “If no one with Down syndrome had ever existed or ever would exist—is that a terrible thing? I don’t know."

PEOPLE WITH DOWN SYNDROME ARE REAL PEOPLE. YOU ARE TALKING ABOUT REAL PEOPLE. Jesus fucking Christ. (5/?)

Article specifically lays out the historical connections between prenatal testing and eugenics--not just philosophically but literally, scientifically, governmentally, as a matter of national policy. (6/?)

Nuanced discussion of the relationship between testing results, lack of real information about people with Down Syndrome, and uncertainty--the tests gives you possibilities but not real answers. "The uncertainty just becomes too much.” (7/?)

"Testing has the effect of reducing an unborn child to a single aspect—Down syndrome, for example—and making parents judge the child’s life on that alone...he didn’t think that most parents who make these decisions are seeking perfection...there’s profound risk aversion.”(8/?)

"“If you handed any expecting parent a whole list of everything their child could possibly encounter during their entire life span—illnesses and stuff like that—then anyone would be scared.”

“Nobody would have a baby,” Grete said." (9/?)

"The hypothetical that Karl Emil’s sister imagined, in which a child’s every risk is laid out, feels closer than ever. How do you choose between one embryo with a slightly elevated risk of schizophrenia and another with a moderate risk of breast cancer?" (10/?)

Again, lots of nuanced discussion between the quotes--false positives and lack of universal access + individual beliefs means it's unlikely we'll ever "eliminate" a given genetic dx. But some will become proxies for poverty. (11/?)

And IVF and new tech speeds this up. They don't eliminate the question of "uncertainty"--they bank on it, and they open it up to a million new frontiers, and then wrap it up in wanting the "best" possible life for your child. Gentle and disastrous. (12/?)

"A company in New Jersey, began offering to screen embryos for risk of hundreds of conditions, including schizophrenia and intellectual disability, though it has since quietly backtracked on the latter..."(13/?)

"... The one test customers keep asking for, the company’s chief scientific officer told me, is for autism. The science isn’t there yet, but the demand is."

This is very, very true. (14/?)

Really interesting discussion about the science of chromosomes themselves, and how the future of genetic testing is becoming much more fine-grained. How will this impact things? (15/?)

"When Rayna Rapp was researching prenatal testing back in the ’80s and ’90s, she came across multiple sets of parents who chose to abort a fetus with a sex-chromosome anomaly out of fear that it could lead to homosexuality—never mind that there is no known link." (16/?)

The discussion of sex chromosomes brings this out of the world of disability + helps illustrate how much more complicated this is than cold medical fact, showing the huge role society plays. Shows the powerful role of bias and uncertainty--at a point, it's not about facts. (17/?)

"As genetic testing has become more widespread, it has revealed just how many other genetic anomalies many of us live with—not only extra or missing chromosomes, but whole chunks of chromosome getting deleted, chunks duplicated..." (18/?)

"...chunks stuck onto a different chromosome altogether, mutations that should be deadly but that show up in the healthy adult in front of you. Every person carries a set of mutations unique to them. This is why new and rare genetic diseases are so hard to diagnose." (19/?)

Remember the role of uncertainty from earlier? It keeps getting bigger and bigger. Genes are not destiny, and the more we learn the more we don't know. The science is extremely complicated. But that complexity isn't reflected in policy or private decisions--just the fear. (20/?)

"I can’t count how many times, in the course of reporting this story, people remarked to me, “You know, people with Down syndrome work and go to college now!” This is an important corrective to the low expectations that persist..." (21/?)

"...but I’ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful."(22/?)

The article has many references to "severe disability" as something that most people understand as something it is desirable to prevent, and posits that part of the issue is that Down Syndrome has such a wide range. But that's part of the problem. (23/?)

For just about any "severe" genetic disability you can name--Angleman's, Rett's, nonspeaking DS + autism, on and on and on--we are finding out that with the right supports, people can do things their families were told were impossible. (24?)

There are conditions that are genuinely incompatible with life. There are conditions that are incredibly painful. There are conditions where medicine may never advance far enough to change that. But that is really, really not the majority of what we are talking about. (25/?)

And the bias of doctors, researchers, and genetic counselors plays a HUGE role here. Over and over again, the scientific ad medical community has shown that it is not qualified to make those judgement calls.

And! Even if someone gets all the supports in the world and still needs intensive 24/7 supports, still has a profound intellectual disability...they are still a person. Their existence is still meaningful. Our assumptions say a lot about us, and very little about them. (27/?)

Nondisabled people are just not qualified to lead this discussion. (28/?)

And finally: the general approach in the repro community re: prenatal testing rn is to say that if we as a society provided better information to pregnant people, and more support to people with disabilities after birth, my community would have nothing to worry about. (29/30)

This article, and the overall situation in Denmark & many other countries, shows that this is not true. As a disabled woman, I unequivocally support the right to abortion. But I need my colleagues to take us seriously, grapple with this, and give us a better answer. Now. (30/30)