Rachel Mills

Research related to the practice of genetic counseling has historically been accomplished through student projects, small private grants, or as a part of a larger research study. Yet, recent initiatives supported by the National Society of Genetic Counselors and the National Human Genome Research Institute have recognized and promoted the need for additional genetic counseling research funding and training. In this study, we aimed to characterize awards from the United States' National Institutes of Health (NIH) over the past 10 years that support research related to genetic counseling. A search of the NIH RePORTER database conducted on April 25, 2022, using terms broadly related to genetic counseling, identified 3993 awards from fiscal years 2011 to 2022. After deduplication, 1231 grants were reviewed for screening. The final dataset included 43 awards of various types with the majority being research or R series grants [R01 ( n = 17), R21 ( n = 7)]. The remaining awards were Cooperative Agreements (U01, n = 6), intramural (Z‐grants, n = 5), Center Core (P30, n = 2), Specialized Center (P50, n = 1), Career Development Award (K01, n = 1), Other Transactions (OT2, n = 1), Resource Program (G13, n = 1), and Research Training and Fellowship (T32, n = 1). Most grants were awarded between 2019 and 2022 ( n = 24, 55.8%). The majority of awards were categorized as studies that included a comparison of different genetic counseling models ( n = 23), outcomes of implementing genetic counseling ( n = 11), core resources for genetic counselors ( n = 5), and genetic counseling training programs ( n = 4). Thirteen of the awards (30.2%) had a specific aim/goal/focus on underserved or underrepresented populations. The topics were predominantly related to cancer ( n = 26). Nine awards were led or co‐led by a genetic counselor (20.9%). Despite significant growth in genetic counseling research support from US‐based funders over the past 3 years, major gaps related to funding exist, including that most award recipients are not genetic counselors.

Disclosure is the act of sharing a stigmatized identity, and members of the LGBTQ+ community make decisions related to disclosure multiple times throughout their life. Disclosure in medical settings can impact perceptions of care and outcomes for LGBTQ+ patients; however, little is understood about the process of decision‐making regarding disclosure in the genetic counseling setting. As such, this study aimed to explore LGBTQ+ experiences in genetic counseling sessions and their disclosure behaviors. Fifty‐five LGBTQ+ individuals who attended a genetic counseling session and 91 genetic counselors completed online surveys. The patient survey assessed for disclosure behaviors, experiences of discrimination, and comfort in genetic counseling sessions. The counselor survey evaluated comfort with the LGBTQ+ population in a counseling setting, whether counselors facilitate disclosure in sessions, and whether counseling is tailored for the LGBTQ+ population. Eighty‐two percent of genetic counselors “rarely” or “never” ask about sexual orientation, and 69% “rarely” or “never” ask about gender identity. The majority of patients indicated they were not asked about their sexual orientation (87%) or gender identity (80%). Some patients reported experiencing discrimination or homo/transphobia in their genetic counseling sessions, with 6.12% of LGBQ+ patients experiencing discrimination and 24.1% of trans+ patients reporting discrimination. Over half of genetic counselors reported receiving training in LGBTQ+ healthcare and the majority reported comfort with providing care to LGBTQ+ patients. However, discrepancies between patient‐reported experiences and genetic counselors' descriptions of their care for the LGBTQ+ population warrant further research and suggest additional training or changes in practice may be necessary.