Disability training in the genetic counseling curricula: bridging the gap between genetic counselors and the disability community.

Over the past two decades, disability activists, ethicists, and genetic counselors have examined the moral complexities inherent in prenatal genetic counseling and considered whether and in what ways genetic counseling may negatively affect individuals in the disability community. Many have expressed concerns about defining disability in the context of prenatal decision-making, as the definition presented may influence prenatal choices. In the past few years, publications have begun to explore the responsibility of counselors in presenting a balanced view of disability and have questioned the preparedness of counselors for this duty. Currently, the Accreditation Council for Genetic Counseling (ACGC) only minimally includes disability training in their competencies for genetic counselors, and in their accreditation requirements for training programs. In an attempt to describe current practice, this article details two studies that assess disability training in ABGC-accredited genetic counseling programs. Results from these studies demonstrate that experience with disability is not required by the majority of programs prior to matriculation. Though most program directors agree on the importance of including disability training in the curriculum, there is wide variability in the amount and types of training students receive. Hours dedicated to disability exposure among programs ranged from 10 to 600 hours. Eighty-five percent of program directors surveyed agree that skills for addressing disability should be added to the core competencies. Establishing a set of disability competencies would help to ensure that all graduates have the skills necessary to provide patients with an accurate understanding of disability that facilitates informed decision-making.

Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine.

OBJECTIVE: To determine whether prior success in recruiting African Americans to an in-house cancer genetics registry could be duplicated when recruiting to a national registry requiring a significantly increased level of commitment. Additionally, to determine which recruitment sources and practices yielded the highest number of African American participants. METHODS: A retrospective analysis of recruitment sources, practices, and results for recruitment to the Cancer Genetics Network (CGN; a national research registry), from 2000 to 2005 was conducted. These results were compared to previous experience in recruiting African Americans to the Family Cancer Registry (FCR; an in-house registry) during the period 1992-2005. RESULTS: In the 1st year of recruitment to the CGN, African Americans accounted for 24% of those consenting to participate in the CGN registry from our center. This compares to an average annual rate of 27% for the FCR during the years 1998-2005, and a rate of less than 1% from 1992 to 1998. By 2005, African Americans accounted for 27% of CGN participants recruited through the University of Texas Southwestern Medical Center, one of eighteen participating institutions in the CGN. Hospital-based resources such as cancer treatment clinics and tumor registries yielded the highest percentage of African American participants (66.5%), and self-referral yielded the lowest (0%). Seventy-seven percent of African Americans were actively sought out and recruited from treatment clinics, whereas the vast majority of Caucasian participants were recruited passively during the course of genetic counseling sessions that were scheduled for reasons unrelated to participation in cancer research. There were no known instances of African Americans contacting CGN staff after reading printed recruitment materials or internet advertisements. CONCLUSIONS: The increased level of commitment required of CGN participants did not deter African Americans from participating in cancer genetics research. Recruitment strategies responsible for dramatically increasing recruitment rates to the FCR from 1998 to 2000 were equally effective when used for recruitment to the CGN. The most effective recruitment sources were high-yield venues such as cancer treatment clinics and tumor registries, and active recruitment methods yielded the highest number of African American participants. Advertising through internet announcements and printed recruitment materials did not appear to be effective.