Genetic Counseling and the Disability Community: A Cautionary Tale

A commentary by Anne Madeo, Barbara Biesecker, Campbell Brasington, Lori Erby and Kathryn Peters in the August issue of the American Journal of Medical Genetics (The Relationship Between the Genetic Counseling Profession and the Disability Community) is going to raise some hackles because it takes on the most sacred cow in genetic counseling: the belief, bordering on dogma, that genetic counselors are good.  Not just good as in the absence of bad, or good like ice cream and lazy Sundays, but good in the dare-I-say religious sense.  Good-doing.  Doers of good.  Beyond well-intentioned, because well-intentioned suggests that one might do the wrong thing by accident.  Genetic counselors are trained good-doers, there to protect and rescue patients from the less finely calibrated ministrations of other medical professionals, particularly doctors.

The perfidy of doctors is sometimes a corollary to the gospel of genetic counseling, in which it is stated that genetic counselors do good.

But I digress.  And while I am digressing, let me hasten to add that I think genetic counselors are as nice as group of people as I have ever known.  And I am not just saying that because I don’t want to get nasty looks at the next NSGC conference; I mean it.  Genetic counselors are as a rule neither cynical nor uncaring, and I have found them to be absolutely dedicated to doing right by their patients.

But you can’t do right by all people all of the time, not if you believe that doing right means supporting them in whatever they decide.  You can’t.  Let’s say a woman carrying a fetus with Down Syndrome arrives in your office.  So now you have a tightrope to walk.  Because if she decides to terminate but has the least degree of uncertainty or guilt, any positive remarks you make about DS kids (They are cute, aren’t they?  And the new research is promising…) is likely to echo in her ears as a reproach.  And if she decides to keep the baby, any negative remark you make about DS kids (They do have a lot of medical issues one should really mention…right?  And lots of people in her shoes would terminate…) is likely to be remembered as proof that the genetics people thought my baby – my baby! – should have been aborted.

Genetic counseling – if it was easy, everybody would do it.  Madeo and company don’t attack genetic counselors, nor do they underestimate the complex balancing act involved in this counseling scenario.  They do suggest that the few available studies suggest that counselors and the NSGC have been more involved with protecting women’s rights to terminate and reassuring those that do, rather than protecting the rights and interests of persons with disabilities.  Of course, this is in part because it is abortion rights that have been under siege.  They quote Arthur Caplan from 2009, advocating activism in a phrase that syntactically ties the anti-abortion movement with Naziism:  “If counselors do not speak up on behalf of their clients, who will?”  True, the authors say, and yet, they suggest– is it hard to understand that many parents of children with DS feel their babies are under siege as well?  There aren’t as many as there used to be.  They call that threatening.  We call it success (yes we do.  Be honest.  Improving our prenatal screening is not about giving parents the chance to know in advance that they are having a kid with DS.  And if it was, insurance wouldn’t pay for it).  So they would like to balance the equation. “If counselors do not also speak up on behalf of clients who choose not to terminate a pregnancy, then who will?” the authors ask of us.  “If counselors do not also speak up on behalf of clients with disabilities, then who will?

A response by the NSGC for the most part focuses on rebutting the charges that either the organization or its members fails to recognize its special obligation to those affected by genetic syndromes and genetic disease.  NSGC President Karin Dent does an admirable job detailing the position statements, collaborations, educational outreach efforts that document our commitment to people with disabilities.  We are trying, the thing says!  We do so much!  But there is something about this primarily defensive posture that denies the essence of the problem.  Defensiveness is our Achilles heel.  “I’m just a soul whose intentions are good” sings Bob Resta in his accompanying commentary, “Oh Lord, please don’t let me be misunderstood.”

As Resta correctly suggests, defensiveness over the issue of whether or not we are fair may be leading us to miss the central issue of this drama: DS births aren’t just going down, they are going down selectively.  Some communities and demographics have better access to screening and intervention; others are more willing to use them.  This is true of DS today, as it will be true of many other screening programs in the future.  The very things that in our lifetimes have been the sort of thing that can happen to anyone (there but for the grace of god go I…) are becoming the sort of thing that only happen to “some people.”

“Imagine yourself in our shoes,” writes Patricia Bauer, the mother of a girl with DS, “as the question hangs in the air at neighborhood gatherings, at the park, at the supermarket. ‘‘Didn’t you have the test?’’ someone asks, eyeing our child’s face with a raised eyebrow that seems to betray surprise, curiosity, disapproval…. If you had been a responsible parent, they seem to say, wouldn’t you have exercised your legal right to abort…”

Lurking in her words is a sociological issue of enormous proportions, one where we may exercise our board-certified ability to do good, if we can stop making the issue all about us.

2 Comments

Filed under Laura Hercher

2 responses to “Genetic Counseling and the Disability Community: A Cautionary Tale

  1. Ronit

    Great post. As a genetic counselor with a disability, I often explain my role to patients and my disabled peers as an advocate for patients. Whether they want to terminate or not based on a diagnosis is up to them, I just help them make their decision. Since I myself have a disability, many patients comment, without prompting from me, that they have reconsidered their thoughts about people with disabilities in general. Even though my disability: blindness, is not one that we routinely test for, it makes an impact on patients seeing what life is like for me as someone who can be employed and have a fulfilling life. Others, who do choose to terminate find that my position also helped them make their decision because they could ask me questions about IEP’s medical expenses, etc that they may not be able to ask other genetic counselors. So, I am a genetic counselor who advocates for patients and their right to choose and be informed about a disabled child both before and after the birth.

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