Disabilities & Genetic Testing

By bioethicist Arthur Caplan, writing for MSNBC: Disability-free world may not be a better place

…Gene testing of parental carriers is leading to the birth of fewer and fewer children with inherited diseases in the United States. Other conditions such as Down syndrome, which uses prenatal testing of the fetus, are also apparently being screened out in greater numbers….
…Reducing the burden of disease is obviously a good thing. But genetic testing of parents, and, as is now happening with increasing frequency, embryos, raises some difficult ethical challenges as well….

There’s an interesting conflict between headline and content, here. In fairness to Caplan, it’s highly unlikely that he got to choose the headline. Still, it’s interesting to point out that the claim suggested by the headline appears nowhere in Caplan’s article. As far as I can see, Caplan doesn’t contemplate what a disability-free world would be like, let alone reaching a conclusion about such a world. I’m pretty sure there are people who argue that the world with disabilities is better than a world without them — perhaps because they think that the rest of us learn something valuable about diversity and tolerance from exposure to persons with disabilities, and this outweighs the difficulties faced by persons with disabilities themselves. But Caplan himself doesn’t make that argument.

The question Caplan tackles is actually quite a different one: what will life be like for people with disabilities in a world in which the number of such persons is reduced, but not reduced to zero?


About Chris MacDonald

I'm a philosopher who teaches at Ryerson University's Ted Rogers School of Management in Toronto, Canada. Most of my scholarly research is on business ethics and healthcare ethics.
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2 Responses to Disabilities & Genetic Testing

  1. s0_wespeakforourselves says:

    This is a prospect suggested by prenatal screening for autism. Wikipedia identifies some 25 markers for autism. Contrary to Autism Speaks’ “Jerry Lewis” style fundraising propaganda, autism is basically a personality type (i.e., difficulty in reading facial body language). A desire for prenatal screening is the direct result of Autism Speaks’ fundraising scare tactics and stigmatization — it runs contrary to valuing each child as a unique individual.

    In the case of autistics, make that a unique individual with valuable contributions to society.

    Prenatal screening for autism only identifies the parents’ own personality traits. (Autism is 90-98% hereditary and anything detected through prenatal screening would identify 100% herediary traits.) In other words, as a result of stigmatization, parents are made to fear their own personalities manifesting in their offspring!

  2. Chris MacDonald says:

    Thanks for your comment. I take it that your main point is that autism is a very poor candidate for genetic screening. I agree.

    But it’s also worth noting that autism is highly variable — hence the term “Autism Spectrum Disorder.” There are of course high-functioning autistics for whom it probably makes a good deal of sense to talk about it as a “personality type.” But in all fairness it needs to be pointed out that, in some cases, Autism involves fairly profound developmental delays and severe behavioural problems.

    But that variability itself probably makes it a very poor candidate for genetic screening. I think we’ll agree on that!


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