I was lucky to know I wanted to be a genetic counselor (GC) when I was in high school. I had ample opportunities to learn about this profession; I attended an undergraduate institution with an established pre-genetic counseling club and a genetic counseling program. I heard from GCs in prenatal, cancer, and pediatric genetics, along with those in rare disease, lab, and research about their roles, ethics, and cultural competency. I thought I was well educated in this profession — the good, the bad, and the ugly. Yet, in all my conversations with GCs, two crucial topics were consistently omitted: the historical evolution of the profession and the dynamics of interpersonal relationships among colleagues.
GCs who speak with prospective students explain what the profession entails quite well, but often avoid sharing content about the scope of the field, its history, and its systemic implications. It is the responsibility of current GCs to educate themselves on these crucial topics and convey them to students. Due to this omission, prospective students wear rose-colored glasses because current GCs withhold the history of this profession and its current relevance.
Gatekeeping Critical Information About the Profession
Genetic counseling was born out of eugenics. Melissa Richter, the founder of the inaugural genetic counseling program, identified the necessity for genetic counseling due to “the increase of illnesses by inherited diseases; the sizable proportion of our population suffering from mental or emotional disturbances; and the problems created by overpopulation,” rationalizations which mirror eugenics goals (Stern, 2008). This connection presents a stark contrast to the profession's current emphasis on advocating for and upholding the autonomy of the patients we serve.
The American Society of Human Genetics has recognized the misuse of genetics to perpetuate societal biases and inequities such as promoting the prejudiced belief that minoritized communities are inferior due to genetic differences or discriminating against Black people based on sickle cell status (American Society of Human Genetics, 2023). I first became aware of the profession’s eugenics roots during my time in graduate school. I am grateful my program did not shy away from the topic, but learning this information left me feeling disconnected from a profession I thought I knew so well. Justice requires acknowledging and addressing past harms. Why hadn't I heard about this before graduate school? This knowledge shattered one of the rose-colored lenses through which I viewed the profession.
Before I entered graduate school, I heard a lot about what GCs were doing to be inclusive of the patient populations they serve. I entered training thinking this respect would be reflected in how GCs treat their colleagues. GCs talk about the profession’s overwhelming demographic homogeneity, but rarely delve into why this is the reality. Perhaps we can trace this homogeneity back to Melissa Richter’s ideal genetic counseling student — “a white-middle aged mother from Westchester County," as these women are “more concerned with health and the preservation of life” (Stern, 2008).
In school, I have been introduced to an immense amount of evidence demonstrating the experiences of underrepresented and marginalized individuals within this profession, revealing instances of disrespect, isolation, and exploitation (National Society of Genetic Counselors, 2021). The omission of these experiences with prospective students perpetuates a silencing of the issues surrounding diversity and marginalization in our profession. Why is no one talking about this with prospective students? My second rose-colored lens was shattered.
Why Shatter These Rose-colored Glasses?
Prospective students need to understand the history behind the birth of our profession before they become GC students. Acknowledging our history can guide aspiring students to discover their individual purpose within this profession and contribute to its advancement. Simultaneously, it serves as a crucial warning for minoritized genetic counseling students who may be caught off guard and disproportionately harmed by the profession's interpersonal dynamics. Do we desire diversity in this profession if it comes at the cost of inclusion, belonging, and justice?
Graduate school has taught me how important it is for counselors to understand the context and background of our patients in order to effectively empathize with them. Empathy builds rapport with our patients and serves as a catalyst for a trusting client-counselor relationship. It is important to appreciate the contextual background of our profession and our colleagues just the same. Doing so fosters a sense of belonging, connection, and well-being in a profession that can be emotionally exhausting.
A Call to Action
The contextual picture being painted to prospective students is fragmented. If we hesitate to talk about the history and systemic implications of this profession’s past and present, we remain stagnant as a profession. We are still working on breaking the cycle of assumptions about who GCs are set by the first genetic counseling program over 50 years ago.
Prospective students deserve a complete picture of what genetic counseling is and how we came to be. Omitting the uncomfortable aspects of our history or the current state of our profession is irresponsible. When communicating with students, why present an idealized image that doesn't reflect reality? It is our responsibility to paint an accurate picture by introducing the history and context of our profession, and how it has shaped its current state to prospective students. Revealing the challenges within the profession not only offers valuable insights but also prompts the recognition of issues that necessitate restorative solutions. To truly evolve and break free from our past, it is imperative we openly acknowledge and address the uncomfortable aspects of our history and current state. Embracing transparency with prospective students is a first step towards forging a future in genetic counseling that is truly inclusive, diverse, and authentic.
References
American Society of Human Genetics. (2023). Facing Our History— Building an Equitable Future. Retrieved March 9, 2023, from https://www.ashg.org/wp-content/uploads/2023/01/Executive-Summary_Facing-Our-History-Buildinh-an-Equitable-Future-012023.pdf
Castro, D. R. (2020, November 18). What is Restorative Justice? Ancestral Practices for Peaceful & Interconnected Living Today. Amplify RJ. Retrieved December 29, 2023, from https://www.amplifyrj.com/post/what-is-restorative-justice-ancestral-practices-for-peaceful-interconnected-living-today
National Institute of Health. (2022, May 18). Eugenics and Scientific Racism. National Human Genome Research Institute. Retrieved December 29, 2023, from https://www.genome.gov/about-genomics/fact-sheets/Eugenics-and-Scientific-Racism
National Society of Genetic Counselors. (2021, April). National Society of Genetic Counselors Diversity, Equity, and Inclusion Assessment [Report of Findings and Recommendations]. Exeter Group.
Stern, A. (2008, November 5). A Quiet Revolution: The Birth of the Genetic Counselor at Sarah Lawrence College, 1969. Journal of Genetic Counseling, 18(1), 1-11. https://doi.org/10.1007/s10897-008-9186-8
Samantha Betterman (she/her) is a first-year student in the master’s program in genetic counseling at Boston University Chobanian & Avedisian School of Medicine. As the past president of a pre-genetic counseling club, she advocates for transparency in discussions with prospective students, specifically on the eugenics history of the genetic counseling field.