Are genetic counselors just misunderstood? Thoughts on “The Relationship Between the Genetic Counseling Profession and the Disability Community: A Commentary”

Abstract

I’m just a soul whose intentions are good/Oh Lord, please don’t letme be misunderstood. From ‘‘Don’t Let Me Be Misunderstood’’written for Nina Simone by Bennie Benjamin, Sol Marcus, GloriaCaldwell, and (uncredited) Horace Ott.Genetic counselors and medical geneticists are by and large goodpeople and highly competent professionals who strive to helppatients and their families cope with the complex ramifications ofgenetic conditions. We proudly embrace a professional philosophyand ethos whereby we support and serve all patients, regardless oftheir abilities, creed, or socioeconomic status. It is not surprisingthat hackles are raised when our intentions and practices arequestioned. The natural reaction to criticism is ‘‘Wait a minute.We are non-directive about abortion, support everyone’s autono-my and reproductive rights, and do our best to provide unbiasedinformation. How can they say that about us?’’ Some of our bestfriends are people with disabilities, right?The commentary by Madeo et al. [2011] may leave many geneticcounselors uncomfortable, unhappy, and, Oh Lord, misunder-stood. However, our perceptions of ourselves may be differentthan our patients’ perceptions of us. In one sense, the Madeocommentary is a form of group peer supervision. A complicatedand controversial counseling topic has been raised; this is anopportunity to explore it. Criticism is never easy to accept, but ifweopenourmindsandtrytoseepastourdeeplyingrainedbiaseswewill grow as individuals and as a profession.It was no doubt as difficult for the authors to write this commentaryas it is to read it. The authors are thoughtful and respected geneticcounseling veterans. When these colleagues raise such issues, it shouldget our attention. We need to put our emotions aside, listen, discuss(notargue), and contemplate.Itmightbepainful,but it canbegainful.Do the authors make valid points? I do not yet know the answer,but I do know that their commentary upset me. My degree of upsetatcriticismisusuallyproportionaltoitsaccuracy—thecloseritistothe bull’s eye of truth, the greater my emotional agita. I am stillsortingthroughmyfeelingsandopinionsaboutthesematters.Butifyou doubt that there is some element of truth to all this then youshouldreadabouttheprofessionalexperiencesofKellyRogel,ageneticcounselorwhohappenstobedeaf(http://thednaexchange.com/2009/12/14/practicing-what-we-preach-genetic-counselors-disability-and-advocacy/).Kellydoesnotconsiderherdeafnessadisability,butclearlysome of her colleagues do. And I have the sneaking suspicion thatKelly’s experiences are not isolated.A significant source of tension between genetic counselors andsomepeoplewithdisabilitiesisthenearlyuniversalofferofprenatalscreening. Of course, the government does not force anyone toundergo prenatal diagnosis or pregnancy termination, nor is itaccurate or constructive to label genetic counseling as a latter dayeugenic program. And, like everyone, people with disabilities andtheir families often have ambivalent feelings about prenatal testingand selective termination.But we also must be honest. Although prenatal diagnosis allowschoices for some parents, reproductive freedom is not what drivesprenatal diagnosis. The prenatal screening engine is fueled primar-ilybyparents’worries about having childrenwith disabilities, a fuelthat is economically cost-effective [Caughey et al., 2010]. Fear ofdisability runs deep and is difficult to uproot. Although someparentsmay undergo prenatal screeningforemotionalandmedicalpreparation for the birth of their child, especially with Down