Abstract
Last year Madeo and colleagues challenged the genetic counseling profession by calling attention to tensions between the profession and the disability community. Their commentary inspired renewed debate about whether the genetic counseling profession is committed to understanding the perspective of people with disabilities, to partnering with disability rights organizations, and to educating students regarding disability awareness. Although there have been previous studies that explored genetic counseling training program curricula with respect to disability related issues, there have been no recent studies assessing genetic counselors’ exposure to disability awareness. The aim of this study was to assess the extent to which recently trained genetic counselors have had experiences related to disability awareness issues, including experiences that have occurred before, during and after their genetic counseling training. We also sought to assess genetic counselors’ perception of the adequacy of their training with respect to disability awareness and their comfort levels in discussing disability with patients and families. To this end we recruited genetic counselors who graduated between 2007 and 2011 to complete an anonymous, online survey. Of the 107 respondents, 36% reported that they had experience working with individuals with disability prior to graduate school. However, there was considerable variation in the extent to which our participants had experienced disability awareness training during graduate school. Only 14% of respondents reported having experiences involving direct interaction with people who have disabilities during their training, aside from time spent in clinical internships. Only 26% felt highly adequate in their preparation to counsel patients about disability immediately after graduation, and in their current jobs, 41% of counselors replied that they sometimes felt conflicted in their discussions about disability. Finally, our study participants suggested that the genetic counseling profession should consider changing genetic counseling program requirements and offer more opportunities for CEUs to promote disability awareness.