Chromosomal microarray analysis, newgenics, and Annie Farlow

A recent news item in the Canadian Medical Association Journal by Roger Collier, Prenatal DNA test raises both hope and worries, discusses the relatively new prenatal diagnostic technique of chromosomal microarray analysis, contextualized by the case of Annie Farlow, which we have discussed in the posts What Sort of Death for Annie? and Deathmaking by medical neglect. Some think that Annie’s fate was sealed by her diagnosis of trisomy 13, not so much because of the nature of the condition itself but because of the downstream effects that labeling had on the medical treatment she received (or not). As the article says,

In August 2005, Annie, not yet 3 months old, suffered a respiratory attack and was admitted to hospital. She died within 24 hours. The official cause was “complications of trisomy 13,” but Farlow and her husband still don’t know the details, despite years of inquiry. They do know, however, that someone issued a do-not-resuscitate order without their consent. “I feel that the genetic testing ultimately determined her fate,” says Farlow, who lives in Mississauga, Ontario. “She was treated as a syndrome. She wasn’t treated as a child.”

See also the pair of posts Living with Trisomy 13 (Part 1 and Part 2) that tell Sam Sansalone’s story of his daughter Katya.

Will treating someone as a syndrome rather than as a child become further consolidated as the norm with the widespread adoption of techniques like chromosomal microarray analysis, which detects chromosomal “anomalies” 100 times smaller than those that can be detected by the karyotyping done by amniocentesis? Most likely. Will parents accept or even demand CMA, once its costs come down, as happened with amnio? Most likely. Will we be further towards a new form of eugenics, striving for human perfection and discarding those who create uncertainty that they will measure up to the norms that issue from the heady cocktail that is one part prenatal testing, one part the modern pursuit of human perfection, mixed with a splash of complacency?

CMA is not yet available in Canada … but stay tuned.

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6 thoughts on “Chromosomal microarray analysis, newgenics, and Annie Farlow

  1. Pingback: Perfecting Mankind « World of Possibility

  2. As suggested in the earlier post “An End to Disability?,” even if we somehow could eliminate disability (at least of some kinds), either by growing back fingers, or by aborting fetuses with certain DNA profiles (as Rob suggests), it is not

    “clear that this would be a good thing, either for those facing the choice or the rest of us. A richness of perspective and a host of other benefits are brought to the world as a consequence of there being people of differing abilities. Whether it is something as commonplace as the installation of a wheelchair ramp that doubles as a bike jump or as world changing as the rise of the modern intensive care unit in response to the polio epidemic of the twentieth century* there are benefits to heterogeneity that would be lost in a world of normals.” (see https://whatsortsofpeople.wordpress.com/2009/03/27/an-end-to-disability/#more-3097)

    What would we be doing to ourselves, to human-kind, to humans as a type of being, by eliminating human physical variation? Have we become so enamored with what is normal, common (shallow?), same, that we can no longer value or celebrate difference, depth? Are there echoes of Nietzsche, of existentialism, here?

  3. I’m having trouble with this whole “new form of eugenics” terminology. There’s been plenty of dark speculation about how all sorts of new technologies are really eugenics by the back doors, or part of the “eugenicist agenda”, or in other ways somehow pro-eugenic and therefore not good. As far as I can see, the reason why things like pre-implantation genetic diagnosis/chromosomal microassay analysis/first term genetic testing etc are considered crypto-eugenic is because they (may) have the effect of cutting down on the number of people born with atypical or anomalous bodies, and so producing a more physically and mentally homogenous future population, with negative consequences for those who live outside socially constructed norms.

    These new technologies may indeed have the effect of reducing atypicality – but so does the March of Dimes, so do folic acid supplements for pregant women, so does cutting back on alcohol consumption during pregnancy for that matter. Are all of these activities, oriented to producing less atypicality (aka “birth defects”) thereby eugenic? Arguably, yes.

    Interstingly, the activities which get condemned (or grimly speculated about) as crypto-eugenics are almost entirely those which involve the possibility that women might choose to terminate a pregnancy. This is the point at which my pro-choice antennae go up. I’m wondering whether the perceived problem with these brave-new-world technologies is that they may (or may not) increase bodily homogeneity, or that they may lead to more abortions? Is choosing abortion the unspeakable issue here?

  4. I think that some of the worries here do come from an anti-abortion standpoint, as typified by the ProWomanProLife folks I linked to. They have a pretty strong anti-choice stance here, one that I think is not defensible, given other values in play.

    For others who are not concerned about abortion per se, I think the motivations are different. They are about the uses of technologies and the implementation of policies in a world that is basically paranoid about human variation and heavily devalues much deviation as disability. That leads to odd double-standards–e.g., you can treat individuals with a diagnosed disability or even just with the indicators of potential disability, in ways that it would be completely unacceptable to treat those without those designations. Odd especially when the language here is not just in terms of parental choice (or to-be-parental choice), but also in terms of improving the lives of those with disabilities. Abortion is one way to affect the lives of a number of individuals–a dramatic intervention for the fetus–but it’s not the only kind of intervention that is of concern for the folks I’m thinking of. Withholding of medical care to infants would be another, as in the case of individuals diagnosed with Trisomy 13; violence directed at children with autism or cerebral palsy would be another. We’ve talked about both on this blog before.

    Just as abortion is not the only form of intervention of interest here, you’re right that new technologies are not the only way of reducing atypicality. There are at least two differences between folic acid supplements (reducing neural tube atypicality, amongst other things perhaps) and avoiding or reducing alcohol consumption during pregnancy. The first is that these interventions make the life of a given individual better off than it would otherwise be. This contrasts with, say, aborting a given fetus because it comes up positive on a trisomy 21 screen. If you don’t take folic acid, or drink heavily during pregnancy, you make a particular individual’s life worse off; if you don’t abort a trisomy 21 fetus, you don’t make any particular individual’s life worse off. The second is that neural tube defects and FAS often have widespread, severe disablement across various social arrangements, while many of the disabilities that lead to differential treatment are (a) not that severe in terms of their intrinsic effects on the people who have them, and (b) have effects that vary significantly with adjustments in social practices that we actually have a lot of control over, at least collectively.

    That said, I think that those appealing to “new forms of eugenics” are often in a not-fully-thought-through state of mind on these things, and here I in no way exclude myself! This leads people to say things like disabilities don’t make people worse off–other people do (perhaps good for political sloganeering, but not really defensible)–or to lean rather heavily on the distinction between impairments and disabilities, emphasizing the evil of the latter, or to mischaracterize existing practices in ways that make us all sound like guards in a Nazi death camp.

  5. Pingback: What Would Darwin Do? « What Sorts of People

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