Embryo screening to reduce autism risk: it’s not in the future. It’s now

28 Dec

A news article on screening of embryos came out last week and it was picked up under various titles by various news outlets.

From Australia and New Zealand

Why IVF parents are choosing girls over boys, which google news also listed under Parents call for embryo screening to cut risks.

IVF parents choosing girls over boys

And a different take

Parents Worldwide Prefer Girls To Boys: Will India And China Learn?

From India

Why girls are preferred over boys by IVF parents

Here’s a quote from one of the stories:

Figures from one of Sydney’s top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

Australia does not allow for gender selection of embryos. One can’t tell the IVF team to pick male or female embryos. But one can ask for genetic screening.

University of Sydney senior lecturer in bioethics Chris Jordens said autism had a strong genetic basis, so it was within the guidelines.

And the trend towards genetic screening is strong and building in the US.

At a recent conference in Chicago, he saw a number of United States IVF providers offering parents without the conditions tests for between 180 and 600 common gene mutations, such as the BRCA ”breast cancer” genes.

Gender selection to reduce autism risk is about the most basic, the most crude, genetic screening one could imagine. But it’s real and it’s happening.

The concept of autism prevention through genetic screening, either in IVF or in selective abortions, has been a major ethical question with the push for genetics research in autism in the past decade.

The first step in guiding our societies towards an ethical approach to genetic testing is to present autism accurately. This is one reason why I and others speak out when groups such as Autism Speaks or some parent “advocates” present autism with phrases such as as “These families are not living” or “Life is lived…in despair”. Is life harder, more challenging for my kid? Absolutely. But what message are we sending to prospective parents when we tell them that their lives will be lived in despair or they will no longer be living if they have an autistic child? We are telling them to do whatever they can to avoid having an autistic child. We are telling them to pick and chose their embryos. We are telling them to selectively abort. We are telling the autistics of today that the perfect world (in the view of the majority) is one without them.

My kid and other autistics, children and adults, deserve life. They deserve the right to pursue happiness. Disabled does not equate to despair.

This is why, Autism Speaks, when you portray my kid as less, my life as not lived, I and others will speak out. Autism Speaks, it’s time you started listening.

By Matt Carey

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17 Responses to “Embryo screening to reduce autism risk: it’s not in the future. It’s now”

  1. autismjungle December 28, 2013 at 18:03 #

    I’m livid.
    Right now, I’m sitting in front of my laptop shaking with rage. Like you said, this is in no small part thanks to the rhetoric of Autism Speaks.
    The irony? There is good evidence that autism happens in females as much as males; it’s just that females are better at concealing their symptoms.

    • Sullivan (Matt Carey) December 29, 2013 at 01:03 #

      I considered commenting on the question of whether the true prevalence difference between girls and boys is that high. There is a serious question of whether girls present differently.

      AS could have made a difference in the public’s perception of autism. But as farmwifetwo clearly demonstrates there are people willing to assist in contributing to the future abortions of autistics. What they gain in return is questionable at best.

      One does wonder how the children of those who throw fuel on the fire of autism fear would feel if the were to read and understand their parent’s beliefs.

  2. farmwifetwo December 28, 2013 at 18:21 #

    There’s been screening for many genetic abnormalities for years and years. It was only a matter of time before autism got added to the list. Sorry, it’s not going away. Autism is a life long disability. It is not high functioning, passing for normal Aspie adults who now have “social communication disorder” per the V. They are disabled children with a multitude of issues that are becoming adults in a world where there are insufficient services and I don’t see the autism groups even advocating for their learning or care. Actually, it seems they work extremely hard to have their needs buried and ignored.

    I never had genetic screening. That was the choice I made and one I do not regret. If someone else makes the choice to screen and abort… IMO that is their right.

    • Saraquill December 30, 2013 at 00:53 #

      Please clarify what you are saying. It sounds like you’re implying that autistic adults don’t exist, and that you can’t be both autistic and be able to live life like many neurotypicals.

    • Julian Frost December 31, 2013 at 15:29 #

      I’ve had to take several days to think about my answer to you, farmwifetwo.

      Autism is a life long disability. It is not high functioning, passing for normal Aspie adults who now have “social communication disorder” per the V.

      Here’s the thing. Firstly, how do you know that the screening will only catch the most critically disabled? It seems very likely that a lot of high-functioning autistics will be swept up as well.
      Secondly, may I remind you that Temple Grandin was pretty low-functioning as a child. Even a poor diagnosis is no guarantee that a child’s outcome will be bad.

      They are disabled children with a multitude of issues that are becoming adults in a world where there are insufficient services and I don’t see the autism groups even advocating for their learning or care.

      No, you don’t see Autism Speaks advocating. ASAN does advocate for their learning and care. I do. You need to read a lot more.
      Genetic selection has questionable ethics. This is not about fixing a genetic defect like spina bifida or a defective heart. This is about choosing a baby the way one would choose a car or outfit. We need to look at the ethical issues a lot harder.

    • autismjungle December 31, 2013 at 15:32 #

      Comment of mine in moderation, I think.

    • Tiffany Jean Greer January 5, 2014 at 04:19 #

      Does a blind child need to be aborted? A deaf child? A child who can’t walk? No neither does an Autistic child, it’s bad enough we are made outcasts and spit upon by society and in my opinion the stepford wife that aborts her autistic child should have a hysterectomy, then have her uterus stretched over her head

    • Chromesthesia January 7, 2014 at 15:55 #

      Uh, at least they acknowledge that non-verbal autistic people can learn and can be intelligent unlike Autism speaks who acts like they should not even exist. Guh. You’re still posting here?!

  3. mike stanton (@convivir) December 28, 2013 at 23:47 #

    Now that genetic testing is available it will be used by those who can afford it. And, as the article makes clear, it is not mainly about autism. Genetic testing is an important medical technology that promises many benefits. Do those benefits pertain to autism? Probably not, because autism is multifactorial and all the genetic markers so far identified only have a statistical association with autism. At present there are no biological markers, genetic or otherwise, that directly point to autism.
    The most consistent finding over the years is that boys are more likely than girls to be diagnosed by a factor of around 4 to 1. According to some studies this rises to 10 to 1 for Asperger’s syndrome and other forms of high functioning autism. But the actual numbers of boys with autism compared to those without offers no justification for therapeutic abortion or pre-implantation genetic diagnosis on the basis of gender.
    The only reason anyone would contemplate embryo screening for autism is admirably stated by Matt Carey- it is the misinformation, spreading fear and uncertainty, regularly promoted by mainstream organizations like Autism Speaks that sets an agenda where lecturer in bioethics, Chris Jordens can claim that this sort of testing is “within the guidelines.”

  4. pcdurbinwestby December 29, 2013 at 05:25 #

    Because the genetic tests, and indeed no tests, can single out so-called “high functioning” embryos from those that are “low functioning,” bringing functioning level into a debate about eugenics seems a bit off the topic. “Regarding selection for sex: In the United States, Dr. Mark Hughes, who helped pioneer the PGD test over a decade ago, says this: “I went into medicine and to science to diagnose and treat and hopefully cure disease,” says Hughes. “Your gender is not a disease, last time I checked. There’s no pathology. There’s no suffering. There’s no illness. And I don’t think doctors have any business being there.”
    “Embryo selection for gender choice and other non-medical reasons is banned in most countries. In the United States, it remains legal and unregulated. And that has many people concerned, especially its founder.” http://paulacdurbinwestbyautisticblog.blogspot.com/2013/10/baby-sex-checks-for-autism-eugenics.html

  5. Chuck Coleman December 29, 2013 at 13:28 #

    If genetic screening had been available in the past, how many talented men would we have lost? Einstein showed signs of being autistic. Can anyone argue that we’re WORSE off for his having been born? Vernon Smith is autistic. He also won the Nobel Prize in Economics for founding the field of experimental economics. Did his birth make us worse off? The future is here and it’s ugly. Aborting fetuses because of a risk of a nonpathology will reduce the diversity that human populations need to survive, We know a lot of this due to Autism $peaks’ fearmongering. The really scary part occurs when narcissism enters the mix, which it has to some extent. Parents who learn that their offspring will not be alike enough to their perfect selves will abort. The irony is that the US federal government has launched a diversity and inclusion initiative. Eugenics works in the opposite direction.

    • Lawrence December 29, 2013 at 14:00 #

      We live in a “Designer Culture” – unfortunately, there are tens of thousands of prospective parents out there (if not more) who, if given the opportunity, would abort any child that wasn’t “perfect.”

      Since one can not truly ever know how exactly their child will turn out (we have no time machines), putting this kind of power in the hands of people can only, ultimately, have dire consequences for future generations – I have no faith that this technology would be used without man giving in to his darker tendencies…..man, what a downer during this holiday season…..

      • Lara Lohne December 29, 2013 at 14:26 #

        Using the logic of aborting any and every non-perfect baby, we might as well abort every baby, since nobody is perfect.

        Who has seen the movie Gattaca? It came out a while ago, 1997 to be exact. It touched on this very thing; weeding out the ‘weak’ to make room and pave the way for the ‘genetically superior’. The thing is, for a person who is truly strong, where it matters, no physical limitation is going to stop them, and one cannot reproduce to create a strong, human spirit. In many situations it is an individual’s disadvantage that brings out their stronger human spirit. Give an individual everything they could possibly want or need and you end up with someone feeling entitled to everything in life and that it should just be given to them. How is THAT progress?

      • autismjungle December 29, 2013 at 17:55 #

        @Lara Lohne, I saw Gattaca. Ethan Hawke’s character, who had a genetic heart disorder and hadn’t had gene therapy, was one of the “de-gene-erates” (that’s what they called them). The character was systematically discriminated against in the job market because he wasn’t genetically superior.

      • Lara Lohne December 30, 2013 at 00:46 #

        autismjungle,

        Exactly! He was discriminated against, but aside from that, he was more determined to reach his dreams than the guy who’s identity he took over even with his ‘genetic’ limitations. Jude Law’s character, said at the end, even with his genetic advantage, he was only ever able to get second place and he was bitter about it. Ethan Hawke’s character was supposed to have been dead for years due to his heart condition. His drive is what kept him going and in the end the one who was ‘genetically superior’ learned that genes didn’t matter, in the end, it was desire, drive and willingness to do what was necessary to become greater than what he was supposed to have been capable of. It’s one of my favorite movies. I hoped we would ever see that future, but with all this delving into the human genome, it was only a matter of time before we did. It starts with this…

  6. Jackie Rose December 30, 2013 at 08:44 #

    I saw and loved Gattaca too. I’m wondering if you’ve seen the alternative ending, where they discuss how the Human Genome Project would be completed, and how certain people would not have existed if we had designed children like in the film.

    Make sure to have Kleenex handy if you’re going to watch it, it’s very moving.

  7. Scott Bunkelmann December 31, 2013 at 20:44 #

    What troubles me is that apparently these “prospective” parents want to avoid having a child with autism because being a parent to an autistic child would be too difficult for them to handle. Perhaps they should consider that being a parent of any child is an enormous undertaking and responsibility and raising even the most “normal” of children is difficult and not for the faint of heart. I have a 9-year-old son who is autistic. If autism is the “worst” thing that happens to your child, consider yourselves lucky.

    If the 1 in 88 or 1 in 50 (I have doubts about the later ratio) chance that your son will have autism troubles you, please note other, mostly more statistically likely events that could happen to your child before they are past their teenage years:

    Nearly four out of 10 young women get pregnant at least once before they turn 20. (crihb.org/files/statistic_on_teen_pregnancy)

    8.1% chance your child will drop out of high school (statisticbrain.com/high-school-dropout-statistics)

    39% of teens have consumed alcohol in the past 30 days and 8% of teens have driven after drinking alcohol in the past 30 days (cdc.gov/alcohol/fact-sheets/underage-drinking)
    By the twelfth grade, about half of adolescents have abused an illicit drug at least once. (hhs.gov/ash/oah/adolescent-health-topics/substance-abuse/home)

    About one in 300 boys and one in 333 girls will develop cancer before their 20th birthday. (acco.org/information/aboutchildhoodcancer/childhoodcancerstatistics)

    Bad things happen to good people. Bad things happen to children of good parents. This is the risk we take when we bring children into this world. Being a parent, dedicated to protecting as well as nurturing and loving your child, is life’s most rewarding experience. It takes strength to be a parent, knowing that it is impossible to protect your child from all risk. Personally, I don’t think you can enjoy being parenting, or life for that matter, if you are governed by your fears.

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