Dark side of genetic research

User Sargon (who commented here) linked a paper with a quite dramatic conclusion for XXY men:

“Prenatal diagnosis of KS leads to induced abortion in 70% of the cases”

IMHO: Better a – possibly infertile – child than no one!

Not necessarily all children will develop the conditions of Klinefelter’s syndrome nor have necessarily to be infertile or enhanced need of coaching.  Since so many XXY men are still undiagnosed , they appear to be inconspicuous. Even those of us who attract attention possess strength and talents! Last but not least, there are men who don’t want to have children or decide later for adopting a child. The lifeform of our children is something which should be respected.

While the detection of XXY is easy (one or more superfluid X-Chromosomes in the karyogramme), it is still difficult with autism. The decisive gene for autism has not been found (yet), though abundant research is done is this direction. As I learned recently, there are also a lot of critical voices of autists concerning the effort to identify the „autism gene“. The reason is simple: see above. A prenatal test, abortion, no autists anymore.

The most well-known autism charity is called „Autism speaks“. A blogger summarized the main critic of many autists:

  • Autism Speaks does not have a single autistic member on their board.

  • Autism Speaks only spends 3% of their budget on “family services”.

  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).

Instead of helping autists by support of their families, to invest in therapy opportunities and to create jobs suited for autistic needs, focus lies on exploring which gene causes autism in order to avoid the birth of future autists by abortion. Brave, new world – if Albert Einstein (presumably Asperger-Autist) had known that!

Scandal for many autists: Google has confederated with „Autism speaks“ to accelerate the search for the „trigger genome“. How to boycott Google? Good question.

To close the circle:

According to the research I done so far on this blog, XXY men tend to enhanced prevalence (with respect to the total population) for autism and autistic traits, respectively. This kind of autism is sometimes called syndromic autism since XXY is a genetic prerequisite. The clou is: Not all XXY men are situated within the autistic spectrum. By guess, half (+/- 20 %) of them develop neurotypically like other XY. Although genotype XXY can coincide with autism, it MUST not. For me, it proves evidence there is no single gene as a trigger. Even if there is a trigger gene, it does not anticipate the degree of the syndrome in the future life.

Basic research is always necessary but I’d like to remind you researchers, physicians, parents and charity organizations, please don’t thin out the diversity of our society. Irrespective of XXY spectrum, Down-Syndrome or autism spectrum, we have a right to live, and the reason for suffering is often the consequence of intolerance and narrow-mindedness of the society.