Who’s Afraid of Genetic Testing?

The September 27th Eye on DNA notes why some, or many, have fears or at least second thoughts, about having a whole genome scan done.

It’s one thing to be tested for a specific genetic mutation because you’re at high risk due to family history or other clinical indicators. It’s another thing to get a whole genome scan to highlight areas that may or may not cause you problems in the future depending on your lifestyle, environmental exposures, and level of impact conferred by the gene.

A whole genome scan could provide one with more information than one wants or knows what to do with—-might any genetic test provide more information than we know what to do with, and how to understand? There is currently no known genetic test for autism. Some 30 to 100 genes have been identified as associated with autism. As an article in the February 2007 Nature Genetics notes,

autism has “numerous genetic origins rather than a single or a few primary causes” (such as a vaccine or something in a vaccine).

Advocates of a causal link between vaccines or something (such as mercury) in vaccines and autism continue to call for more studies about rates of autism in vaccinated and unvaccinated children; they tend to disregard and even to dismiss genetic influences. Is there some fear of what genetic testing might find—-that there is a little autism, or some aspect of some of the features of autism, in parents, family members, and relatives of autistic children? That there is something in us autism parents that has contributed to our child’s becoming autistic?

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    • http://www.parents.com/autismville Judith Ursitti

      In addition, it’s so frustrating when people start contesting genetic testing because they say it contributes to higher rates of abortion.

      Great big whatever!!!

      I was of advanced maternal age and did amnio and genetic testing with Jack … not so I could terminate but so I could prepare. I suppose some people prefer to live in a world that is flat rather than to progress…

      Frustrating …

    • http://www.mumkeepingsane.blogspot.com Leanne

      I chose not to have genetic testing. I suppose if I was worried about something specific in the family I might have. We didn’t feel we needed to be prepared for anything…but we’re kind of like that in our life too. We just deal with whatever comes up.

      I don’t think we would have been any better off if we’d known Patrick was autistic from the beginning. If anything, the bond we formed with him over the first 4 years of his life helped us to not totally freak out when we found out he was autistic. (and no, I’m not suggesting we’re not bonded to our babies before birth, simply saying that we ‘knew him’ and his personality and were already comfortable with who he was before we had a name for it).

      I don’t really care if someone else feels they need genetic testing. It just wasn’t for us.

    • http://autismnaturalvariation.blogspot.com Joseph

      I’m all for letting nature continue to do, you know, natural selection. This artificial selection proposal sounds like a terribly bad idea.

    • http://www.autismvox.com Kristina Chew, PhD

      Eye on DNA author Hsien Hsien Lei notes this response from relatives:

      You think you’re healthy when you go see the doctor. No symptoms. Nothing. Then they do all those tests and find out there’s something wrong with you. And the next thing you know, you’re dead or dying!

      Thinking goes from cautious and curious to alarmist……

    • Karen

      We could talk about this for hours, eh? I think some people might shy away from genetic testing because of the possibility of it leading to eugenics and also the fact that for decades, mothers were blamed for their children’s autism. So why would be want to be “blamed” again? Most people I know are much more progressive in their thinking by now about much of the “blame game.” My former husband spent a good many months blaming me for Pete’s early lack of interest in speech, however. It’s complicated and complex.

      I have no doubt that my son’s autistic traits come from my former husband’s side of the family (I can name at least three others with similar traits, ex-H included) but I think I have some sensory issues and anxiety issues on my side (me included). How could Pete NOT be an amalgamation of his parents’ genes? My own issues only help me to understand my son better and for that, I am grateful.

      karen in ca

    • http://autisminnb.blogspot.com/ Harold L Doherty

      “Advocates of a causal link between vaccines or something (such as mercury) in vaccines and autism continue to call for more studies about rates of autism in vaccinated and unvaccinated children; they tend to disregard and even to dismiss genetic influences. Is there some fear of what genetic testing might find—-that there is a little autism, or some aspect of some of the features of autism, in parents, family members, and relatives of autistic children? That there is something in us autism parents that has contributed to our child’s becoming autistic?”

      Do you have anything to substantiate the assumptions of fact set out in your comment? This comment seems little more than an exercise in jabbing at those who believe in a mercury or environmental connection to autism.

      As one who is NOT convinced by the evidence on a mercury autism connection I still don’t see how this type of speculation about other persons fears and personal makeup advances our knowledge of autism or autism causality. Nor do I see how it advances the interests of autistic children or adults.

      Personally, I am fascinated by all the research concerning all aspects of autism currently underway, whether it be genetic, environmental or increasingly – oriented towards a unified approach to understanding autism.

    • Cliff

      It matters because science has rather heavily decided that there isn’t a link. Another one recently, and people are attacking that methodology, even when they assisted it. I think it’s fair to turn to ask why people psychologically won’t look to genetics and continue down the same path despite evidence.

      On the other hand, I would just accept what I get. Now, I’m not a parent (that would not be a good thing, especially since I’m just turning 17 with no income to speak of), but I would think in that situation that I wouldn’t want to select for kids, and just learn and grow with what I get as part of the experience. I think, in many ways, your posts, Kristina, about your experiences with Charlie are evidence enough for the value of that.

      Cliff

    • http://www.autismvox.com Kristina Chew, PhD

      Dr. Lei’s post on advertising for the BRACAnalysis–it’s a direct-to-consumer genetic test for breast and ovarian cancer genes (BRCA1 and BRCA2)—-prompted me to think about genetics testing and autism, and the responses that sometimes appear whenever genetics are mentioned in regard to autism causation. As much as we might think such a test might not be necessary, what might we do if a company promoted such a test? (Or claimed that they were?) Calls for research in biomedical treatments and environmental causes for autism have indeed received much promotion of late.

      I’d like to keep reflecting on why belief in mercury and/ vaccines as causes for autism persists, as Orac wrote about yesterday. Autism research is a fascinating topic, but not all of it has (or yet has) valid scientific evidence behind it.

      Karen, I must quote you with a small change, “How could [Charlie] NOT be an amalgamation of his parents’ genes?” — Cliff, just had another object lesson in why parenting Charlie can come with fewer headaches than for my friends with typical kids….

    • Patrick

      Hey Harold, I got a couple of links for you that kinda of show the things mentioned in the actual Statement part of what you quoted. Plenty of hot, though perhaps controversial, reading over there. As I can see you are quite a capable reader, I will have to leave you to follow up with the digging for any Truth behind it. The rest of what I see quoted were Questions, and not necessarily rhetorical ones, from how I read them.

      http://onedadsopinion.blogspot.com/2007/09/juxtanother-juxtaposition.html

      http://www.rescuepost.com

    • Liz

      I consider myself impartial to the major belief camps in the ASD community and….

      Actually, most of the folks that **I** know who propose there’s a link between vaccines and ASD also believe that there’s a “genetic susceptibility that is triggered by something/s in the environment/vaccines.”
      Another point is that these same people feel more guilt/regret that ***they*** held their children down to get vaccinated than if they had -contributed- to their children’s ASD thru their genes.
      The only reason they believe genes play a partial role to ASD is because they believe the increase of ASD is reaching epidemic proportions.

    • http://www.autismvox.com Kristina Chew, PhD

      The incidence of autism may feel as if it is an epidemic, but there is no epidemic of autism.

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    • Melanie, Bobby’s mom

      Personally, I’d find genetic testing more useful *after* diagnosis to determine what “subtype” of autism Bobby had (if it were possible to effectively determine that!) , so I’d know what interventions would be most effective. We worked so hard to have our boy that an in-utero test would have changed nothing except our preparation, as Judith mentioned in the first comment. Bobby was different from his peers very early on in several ways, so it’s not like “our child vanished” as I’ve seen others (in the media!) say.

      My interest for “subtype determination” comes from my dad’s experiences. He’s got Long Q-T syndrome, which is a frequently fatal electrical heart problem. Knowing his subtype of Long Q-T helped the docs figure out which meds would be the best fit without a risky trial and error period. I believe some types of cancer have the same genetic analysis that helps us know what treatments to try first. I’m a fan of more info in general.

    • Regan

      My thoughts on genetic testing is that it might be useful for the “subtyping” that others have alluded to because my interests are in the possible predictive value for medical treatment and precise educational interventions.
      In addition to myself and whatever druthers I might have, the other person in the equation is my older daughter. Given some of the family traits in illnesses and syndromes, she stated that she wants to know the future probabilities so that she can be forewarned and make informed choices on her own behalf, and I am inclined to respect her point of view.