GeneBites

During a time when diversity, equity, inclusion, and accessibility (DEIA) initiatives are under attack by the presidential administration in the United States, it’s important to reflect on how DEIA principles in education affect the upcoming generation of the scientific workforce. Two studies published in the Journal of Genetic Counseling in 2023 highlight how diversity impacts how LGBTQIA+ prospective students evaluate genetic counseling programs and how heteronormativity (assumption that being straight is the normal orientation) in genetic counseling programs impacts relationships between LGBTQ students and their peers and faculty.

Genetic counseling is a healthcare career where practitioners use family history and genetic testing results to help patients understand and cope with their risks of inheriting particular health conditions. Although the influence of genetics on health is an important consideration for people of all types, the field of genetic counseling itself is not especially diverse. For instance, in the National Society of Genetic Counselors 2024 Professional Status Survey, 92% of respondents self-reported as women, 87% as White, and 86% as heterosexual. 

Given the recent influx of executive orders aimed at stopping DEIA in the U.S. federal government [1,2]  and K-12 public education, as well as the executive order attempting to redefine sex as to erase the legal existence of transgender and non-binary people, it’s a crucial time to revisit research highlighting the lived experiences of LGBTQIA+ people, including those studying to become genetic counselors.

A qualitative study by O’Sullivan et al. focuses on the experiences LGBTQIA+ individuals had during the admissions process for genetic counseling graduate programs. The researchers conducted semi-structured interviews (which generally have open-ended questions and can incorporate follow-up questions based on the discussion) with 10 LGBTQIA+ participants who were either enrolled in a genetic counseling program or had recently graduated. 

The researchers found that diversity impacted whether the participants disclosed their LGBTQIA+ identity during the admissions process and how they selected and ranked different programs. For instance, when programs talked about their DEI-related initiatives, participants were more comfortable coming out during the admissions process. 

Notably, all of the participants mentioned the importance of diversity (in elements such as faculty members, the student body, patients, and program statements and curriculum) when considering specific programs, as well the location of the school (citing factors including political environment and the likelihood of having other peers in the LGBTQIA+ community). Experiences during admissions interviews also impacted the prospective students, where honesty and discussions of support were appreciated, and negative experiences regarding identity and disability led to discomfort with some programs.

These findings highlight how visible dedication to diversity and an accepting environment impacts recruitment of LGBTQIA+ genetic counseling students.

The Chu et al. study focuses on the interactions that LGBTQ genetic counseling students had with their peers and with faculty once they had entered a graduate program. This study also utilized semi-structured interviews, this time with 13 current or recent students. 

Several participants in the study reported a general assumption that students were straight in class and in the clinic, contributing to discomfort and potential gaps in support. Some examples include: (1)  a participant recalled classmates saying that they didn’t know any gay people, (2) another mentioned classwork that asked about the student’s attitude towards LGBTQ people (as though from an outside, non-LGBTQ perspective), and (3) a female participant was asked whether she had a boyfriend.

Another concern discussed by several participants was that some experiences with peers and faculty made them feel isolated and uncomfortable, including outright queerphobic or transphobic comments, misgendering a student, not responding/engaging when a queer student shared their perspective, and heteronormativity in lessons about inheritance (e.g. phrasing examples in a way that assumes that a man will have biological children with a woman). Additionally, the study found that it’s not enough to encourage diversity in recruitment, but that it’s also critical to establish a supportive program environment for LGBTQ students without reducing them to just their queer identity. Some participants also described how their experiences were impacted by being part of additional minority groups, such as being a person of color or having a disability. Faculty and peers actively supporting different facets of student identity helped minority students feel connected and comfortable. 

Now is a critical time to acknowledge the research highlighting the importance of active support for the challenges LGBTQIA+ people face due to their identity, as the future of such information is in danger. A memorandum sent to federal agencies in January guiding implementation of an executive order instructed removal of information, resource groups, etc. related to “gender ideology” (the fact that gender and sex are distinct and that transgender and non-binary people exist). Government websites removed many pages of health information (including those related to LGBTQ health and racial health disparities), at least temporarily. Some of these pages (including the CDC’s page about health disparities for LGBTQ youth, whose title was changed to “Health Disparities Among LGBQ Youth”) were only restored after a judge’s order, and with a disclaimer about “gender ideology” being “inaccurate and disconnected from the immutable biological reality that there are two sexes”. Additionally, research studies related to health of transgender people have been stopped, and many science institutions, both government-associated and private, have removed DEI-related language from their websites and initiatives. 

If meritocracy is truly the goal for the future of science and healthcare, then programs need to commit to providing support for, and advocating on behalf of, those among the best and brightest who are part of the LGBTQIA+ community (or other minority groups). This will allow for diverse perspectives to drive a well-rounded breadth of research questions.

Edited by Olivia Fish and JP Flores