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Behavior and genetics, Part 2: Eugenics

April 18, 2010

In the first part of this post, I made a few comments on a recent New Scientist feature: Ed Yong’s Dangerous DNA: The truth about the ‘warrior gene’. In it, the author details some of the ways in which it is both foolhardy and dangerous to point at specific genetic variations as the One True Cause of behaviors.

To continue, from the last part, ‘One thing Yong did not explicitly mention: the risk of eugenics based on dodgy understanding and research, feeding some really nasty attitudes.

We have seen how this sort of thing already gets applied to Down Syndrome (trisomy 21). Here is a decent overview, with lots of figures–which I hesistated to use, with its being from an overtly pro-life source, but the cited research I looked into checks out. I’m suspicious of any ideology-driven report of research, but I guess you don’t have to make things up and willfully misinterpret them, with a ready enough supply of this kind of thing:

A 2000 anonymous survey of 499 primary care physicians in the United States, published by Georgetown University, indicated that only 4 percent of physicians who attend women whose babies are pre-natally diagnosed encourage them to continue the pregnancy and allow the baby with Down syndrome to be born.

Even more scarily, in that survey:

Thirteen percent of doctors attending pregnant mothers whose babies are discovered to have Down syndrome, this survey said, “emphasize” the negative aspects of Down syndrome and 10 percent said they “urge” the mothers to terminate the life of the baby.

Sixty-three percent reported they “tried to be as unbiased as possible when delivering a pre-natal diagnosis” and 10 percent indicated they “emphasize” the positive aspects of Down syndrome.

Something tells me that’s not nearly as unbiased nor positive as the doctors would like to think, in many cases.

Mothers are under a lot of pressure, both from doctors and from the society at large, as described in Confronting the Distortions: Mothers of Children with Down Syndrome and Prenatal Testing. I can’t find one excellent essay from a mother, which I’d hoped to link to, describing some of the nastiness she and her child with Down’s have run into from other parents, including the not-exactly-subtle message that she is irresponsible and unfair to society at large. I seem to recall that she specifically mentioned some abuse from people who thought prenatal screening should be mandatory; she is hardly the only one to have run into this attitude.

As for other prenatal testing, AFP in this case:

Genetic testing, of any sort, usually brings a large debate. The alphfetoprotein (AFP), also known as the triple screen, quad sreen or penta screen, are no exceptions…

However, many women are made to believe the testing is mandatory. Many who refuse are asked to sign waivers in order to not take the test.

The same goes for amniocentesis, AFAICT.

Just the readily available bit of this Overview of prenatal screening and diagnosis of Down syndrome sums up prevailing attitudes very well indeed, with a focus on the “significant burden of disease” and the “safe and effective options” to prevent this burden.

This kind of thing is hardly limited to trisomy 21, though that is a prominent example. As Joan Hume described the situation in one excellent paper, Disability, Feminism and Eugenics: Who has the right to decide who should or should not inhabit the world?:

Pre-natal screening and diagnostic technologies underscore the extent to which eugenic values are operating in their promotion and application. Eugenics operates when women with disabilities are pressured not to have children, when non-disabled women are encouraged to use the tests during pregnancy to detect and eliminate ever increasing numbers of detectable disabling conditions. The presumption that a positive test result will inevitably be followed by an abortion is particularly repugnant to, and disrespectful of, people with disabilities.

The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents. The message to all women is equally clear: it is neither socially acceptable nor responsible to carry to full term a foetus with a disabling condition. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad. Given the continuing widespread discrimination against people with disabilities, for a woman to give birth to anything less than a perfect baby is not only socially and economically undesirable but irresponsible.

And, as pointed out in the New Scientist article, certain genetic variations which may or may not do anything like what has been claimed have been cited as impairments, if not threats to other people. What quickly develops is a perception that some human beings are genetic mistakes.

Additionally,

This is well perceived by groups of disabled people and their families who, in Japan, strongly opposed the insertion of the words “fetal conditions” in the revision of the law allowing abortion. They, rightly, saw in such selective abortions a denial of their own right to have been born.

Theirs was deemed to be a so-called wrongful life whose birth could have been prevented by a better medical technology. If this view becomes accepted by society, it is clear that people who do bring handicapped children into the world will be looked upon as foolish and irresponsible…

Emphasizing the distinction between compulsory and freely chosen eugenics may be thought to ignore the fact that individual choices are never made in a social vacuum.

This kind of thing scares the hell out of me, given the current emphasis on trying to find (simplistic) genetic explanations for all sorts of behaviors deemed undesirable, frequently linking them to existing categories of presumed biological “mental illness” in an even more simplistic manner. At the same time, the range of what behaviors are considered desirable by society at large seems to be shrinking, as demonstrated by the number of kids being given psychiatric medications to “fix” their brains.

As Amanda points out in Genetic Outlaws:

That clearly and absolutely means children like me. And children like most of us, in the end, because this sort of thing never stops at the first people they target. Once all the most obvious things are screened out, there will be a new, tighter definition of what’s normal and what’s defective. And so on and so forth.

And parents who decide to have children like us anyway, will indeed be “genetic outlaws”, and may in the future even be forced rather than merely bullied and coerced into not having us.

Her blog’s title, Ballastexistenz, echoes these continuing attitudes. As she points out, the “Black Stork” approach is still going strong.

I have run up against some of these lousy attitudes personally, as applied to women presumed likely to pass along genetic badness. The experiences I’ve had have been mild, as these things go. I think we’re all familiar with the lay perception that people with certain disabilities should not have children, but most of this has come from medical professionals, who have assumed that having children while diagnosed as mentally ill just shouldn’t happen. One bullied me into taking an IUD I did not want after finding out that the medication I was taking was prescribed for bipolar disorder (and abruptly starting to treat me like a potentially violent crazy person).

It turns out that I was never bipolar, but that doesn’t matter; it’s all about behavior perceived as unusual. If anything, perceptions of producing hypothetical autistic children are even worse.

Autism Speaks is both symbolic of a larger problem, and scarily influential. The organization both feeds off and promotes all sorts of harmful attitudes, working off the tragedy model and the threat of a nonexistent epidemic of burdensome children. They also push research to identify the genetic “causes” of autistic behavior, and fund the really freaking scary international public-private Autism Genome Project. A good summary, from ABFH: Autism Speaks’ Eugenic Agenda (hint: you’re not being very subtle with it if you endorse some of Watson’s views). The organization prioritizes biomedical and genetic research over actually helping autistic people and their families. In short, their goal of ultimate “help” for autistics is to make sure we don’t exist anymore. There is no other way of “curing” us which has any hope of working.

Then there’s the fairly representative academic Autism Research Team at Oxford’s Wellcome Trust Centre for Human Genetics’ NEUROGENETICS & PSYCHIATRIC DISORDERS: Neurodevelopmental and Neurological Disorders Group. Supposedly:

A main aim in identifying autism susceptibility genes is to enable the early diagnosis of autism, so that affected infants and their families can access the early intervention that is critical to obtaining the maximum benefit from existing therapies. In addition, it is hoped that identifying the genes involved in autism could in the longer term lead to the development of better medications, which could help improve the health and neurodevelopment of children with autism.

Also, “One recent estimate is that genetic factors may contribute about 90% to autism, while environmental factors contribute no more than 10%” (emphasis original).

While most researchers may not be personally wanting to get all eugenic on other people’s bodies, they are still working off assumptions based in a tragedy model of disability, along with a severely limited range of acceptable human diversity; this research group is very blatant with it. It is more than a little disingenuous to ignore that other people are eager to use this research for eugenic purposes.

People have already been having abortions to try to prevent the birth of autistic children, and some researchers have wanted to screen embryos:

There is no in utero test for autism as there is for Down syndrome. As I have previously told “BreakPoint” listeners, that testing, combined with abortion-on-demand, has made people with Down syndrome an endangered population. By some estimates, 90 percent of these people—who, if allowed to live, can live happy and healthy lives—are aborted.

In the absence of such a test for autism, researchers at University College Hospital London are settling for what they call a “close enough” solution. They have applied for permission to use pre-implantation genetic diagnosis, or PGD, to screen out male embryos in families with a history of autism.

Their “logic” is that since 90 percent of all autistic people are males, their testing would allow families with autistic children “to have a daughter free from the condition.” Of course, they would have also killed males who were not autistic.

This is what can happen when you have been taught to view your own children as burdens and tragedies. Without one hell of a lot of focus on the perceived burdens of disability and disabled people, this would not happen.

Mike Stanton had more to say about this:

I am also concerned about the impact on a family who go through this arduous process. What if they have an autistic daughter? Having gone to such lengths to avoid another autistic child how will the parents react to her? And if she isn’t autistic will having a normal little girl to love affect their feelings for her autistic siblings? How will the boys feel if they think that their parents in rejecting autism are rejecting them? Will the parents place all their hopes on their daughter? Will she feel pressured to succeed in all the things her brothers struggle with?

That was in 2006; I haven’t been hearing more about this particular screening since. Still, someone wants to do this, while admitting that they still have very little idea what is going on.

Just from looking at my own family and other people I know personally (both face-to-face and online), I do not believe that most of the perceived sex-based differences in prevalence are based on fact rather than perceptions, anyway. (See Diagnostic change and the increased prevalence of autism for how similar has been playing out.) There’s rather a lot out there about underrecognition in girls and women, including a recent Guardian piece: Doctors are ‘failing to spot Asperger’s in girls’. There is also the recent Why autism is different for girls, and the book Women From Another Planet?: Our Lives in the Universe of Autism. It’s hooey, but very dangerous nonetheless.

To tie this back in more explicitly to the original article, one of the major problems I have here is that what they are doing when they diagnose autism, mental illnesses, etc. is describing behavior. (I went into this in a bit more depth in Sorts of people, and conflict.) The most professionals can possibly do, given current levels of knowledge, is categorize behavior, and speculate as to what might be causing said behavior. And, to great extent, I have to agree with Thomas Szasz’s MENTAL DISORDERS ARE NOT DISEASES: “Mental diseases are patterns of personal conduct, unwanted by the self or others.” There is a huge distinction between that and a “disease” which can be “cured”.

Ultimately–for all the reasons stated in Yong’s article, and then some–trying to find the genetic “causes” of what is considered autistic behavior is a fool’s errand. Living beings are just too complex, before you even get to all the social and environmental factors. Still, a lot of children will not be born because of this kind of fear and hubris.

2 Comments leave one →
  1. April 19, 2010 4:01 pm

    A well considered and well written article. Thank you.

    I wonder how you might consider the work undergoing to understand the causes of cognitive impairment in Down syndrome, with the hopes of developing therapy that could improve memory and learning in persons with Ds, and perhaps assist persons to live independently.

    The availability in the future of therapies as an option to improve cognition would certainly weigh in on the decisions one would make following a pre-natal diagnosis of Down syndrome.

    Our website contains some interesting discussion and links to blogs in which parents consider a potential for cognitive therapy….

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