The article below reflects the personal opinions of the author(s) and does not reflect the views or opinions of the Perspectives editors or committee, or the National Society of Genetic Counselors (NSGC).
Medical literature has largely acknowledged the misuse of the social construct of race and ethnicity. This practice facilitates improper connections between race and ethnicity, genetics and sociological racial and ethnic disparities, further perpetuating the misconception that there are biologically derived racial and ethnic differences (Green et al., 2022). Such misconceptions can impair how health care providers make clinical decisions and contribute to the health care disparities experienced by patients of color (Green et al., 2022). These outcomes can also intersect with the experiences of providers of color who are still subjected to racism, despite being members of the institution of medicine (Green et al., 2022).
In medical genetics and genomics (MGG), much of the research addressing issues of race and ethnicity in genetic counseling has focused on improving professional environments, training experiences and workplace culture, with a particular emphasis on genetic counselors (Carmichael et al., 2022; Wicklund et al., 2022). Working with MGG residents in clinical rotations and observing them on inpatient services motivated me to want to highlight their perspectives on race-related issues in our field, to diversify the voices being platformed. It was these opportunities during my graduate school experience that inspired the focus of my thesis research project and this article.
The Forces at Play
Publishing any manuscript is a time-intensive endeavor, from countless rounds of revision to finally submitting the final product. However, systemic racism was a confounding variable I did not fully account for. Systemic racism can be defined as policies and practices ingrained in established, interconnected institutions, such as health care systems, that result in the exclusion or promotion of designated racial and ethnic groups, requiring no individual intent (Needham et al., 2022; Understanding Racial Terms and Differences | EDI NIH, n.d.).
As I began to highlight key themes and patterns observed from my participants’ stories, alongside identifying potential practices that may remedy their concerns, that’s when things got complicated. I witnessed lived experiences written on paper being denied in conversation with senior colleagues and first-round reviewers about these findings. Naturally, existing limitations of qualitative research, such as the subjective interpretation of statements, became strikes that invalidated my work. Mentors I had long looked up to became perpetrators of frequent statements that negated and dismissed participants’ personal feelings, thoughts and experiences, commonly known as microaggressions or microinvalidations (Ehie et al., 2021). I began to question if my research would be beneficial to the field of MGG or if I was even qualified to carry out such an important topic.
I was used to being informally enlisted to educate my peers about issues related to race and ethnicity; however, this was the first time I experienced comments in an academic setting that made me question my own lived experiences. Such comments felt even more impactful once multiple scholarly journals I spent hours vetting for compatibility rejected my ever-evolving manuscript, as statements like, “That’s a big generalization to make,” further shut me down. I began to wonder if my topic itself was a contributing factor in publishing delays, when even sterilized versions of the manuscript were deemed “out of scope” for MGG journals that appeared to pride themselves on championing antiracism efforts. I felt I had to silence large aspects of truth from stories that were shared with me, and began to stay so close to the data that reviewers requested more thematic analysis. Over the past two years, I slowly withdrew from club meetings, social justice circles within genetic counseling and beyond, and even stopped working on the manuscript itself. I burned out. The passion and drive I once had for an equitable genomic future became a distant memory.
My Foray Into Medical Genetics and Genomics Research
As a multiracial and multiethnic individual, the reality of systemic racism is not news to me. Informal education on this harsh reality is drawn from my own anecdotes. Such lived experiences drew me to being a genetic counselor, with hopes of enhancing access to genomic medicine, which disproportionately neglects communities of color (Popejoy & Fullerton, 2016; Suther & Kiros, 2009). While education on race and racism in genetic counseling has room for improvement, I remain grateful that work is being done in our field to address these issues. Such work has facilitated my education and allowed me to pursue a thesis in which I assessed a critical area of genetic counseling performed by medical geneticists, whose training is a combination of similar and different aspects from those of genetic counselors. I remember the storms of questions I couldn’t wait to ask MGG residents who enrolled in my study, which kept me up at night. This excitement drove me to complete numerous interviews with the residents as the basis for my research. We explored themes I was eager to contribute to MGG and the conversations the field was initiating on antiracist approaches. However, looking back now on this early excitement only brings waves of grief over the passion I once had, as I approached two years of trying to publish my research.
Where I’m at Today
Thankfully, my search for a journal that was willing to publish my manuscript came to an end, and I found a place where my body of work has the potential to find a home, in the Journal of Genetic Counseling (JoGC). Previous journals rejected the manuscript up front or didn’t allow for revisions to be made after receiving contradictory reviewer comments, ranging from asking for more analysis to basically claiming that racism doesn’t exist in MGG. However, JoGC provided me with constructive feedback that allowed me to refine the manuscript, rather than give up on it altogether. Having a journal work with me as opposed to against me helped reactivate my passion for social justice, especially as I see racial disparities unfold in real time in inpatient units alongside the atrocities actively occurring in our world. However, I often think about the countless days when it felt easier to give up on the powerful testimonies that my research participants took the time to open up about. It was also not lost on me that a journal focused on genetic counseling was more willing to collaborate with me than others, more focused on medical geneticists as their primary audience. Too often, social justice champions in MGG, who are often people of color, feel obligated to contribute their perspectives and bandwidth to educate their peers about such issues to the point of frustration and exhaustion (Carmichael et al., 2020).
While this story is still being written, I hope that as a field we continue to compassionately interrogate ourselves, engage deeply in institutional reflection, and inch closer to an antiracist future in medicine.
References
Carmichael, N., Redlinger-Grosse, K., & Birnbaum, S. (2020). Conscripted curriculum: The experiences of minority genetic counseling students. Journal of Genetic Counseling, 29(2), 303–314. https://doi.org/10.1002/jgc4.1260
Carmichael, N., Redlinger-Grosse, K., & Birnbaum, S. (2022). Examining clinical training through a bicultural lens: Experiences of genetic counseling students who identify with a racial or ethnic minority group. Journal of Genetic Counseling, 31(2), 411–423. https://doi.org/10.1002/jgc4.1506
Ehie, O., Muse, I., Hill, L., & Bastien, A. (2021). Professionalism: Microaggression in the healthcare setting. Current Opinion in Anaesthesiology, 34(2), 131–136. https://doi.org/10.1097/ACO.0000000000000966
Green, K.-A., Wolinsky, R., Parnell, S. J., del Campo, D., Nathan, A. S., Garg, P. S., Kaplan, S. E., & Dasgupta, S. (2022). Deconstructing Racism, Hierarchy, and Power in Medical Education: Guiding Principles on Inclusive Curriculum Design. Academic Medicine, 97(6), 804. https://doi.org/10.1097/ACM.0000000000004531
Needham, B. L., Ali, T., Allgood, K. L., Ro, A., Hirschtick, J. L., & Fleischer, N. L. (2022). Institutional Racism and Health: A Framework for Conceptualization, Measurement, and Analysis. Journal of Racial and Ethnic Health Disparities, 1–23. https://doi.org/10.1007/s40615-022-01381-9
Popejoy, A. B., & Fullerton, S. M. (2016). Genomics is failing on diversity. Nature, 538(7624), 161–164. https://doi.org/10.1038/538161a
Suther, S., & Kiros, G.-E. (2009). Barriers to the use of genetic testing: A study of racial and ethnic disparities. Genetics in Medicine, 11(9), 655–662. https://doi.org/10.1097/GIM.0b013e3181ab22aa
Understanding Racial Terms and Differences | EDI NIH. (n.d.). Retrieved September 17, 2024, from https://www.edi.nih.gov/the-EDI-pulse-blog/understanding-racial-terms-and-differences#18
Wicklund, C., Sanghavi, K., Coleman, B., Taber, K. J., Taylor, J. Y., Asalone, K. C., & Beachy, S. (2022). Improving racial diversity in the genomics workforce: An examination of challenges and opportunities. Genetics in Medicine, 24(8), 1640–1643. https://doi.org/10.1016/j.gim.2022.04.015
Justin Gomez-Stafford, MS, CGC Justin Gomez-Stafford is an inpatient pediatric genetic counselor at Boston Children’s Hospital. In this role, he serves as an on-call provider for inpatient genetics consults at Boston Children's Hospital, Brigham and Women's Hospital & Beth Israel Hospital, alongside a rotating group of attending geneticists and residents/fellows. Gomez-Stafford also aids in the coordination of rapid genetic testing and results disclosures, alongside facilitating outpatient follow-up. Gomez-Stafford is a graduate of Stanford University's Genetic Counseling Graduate Program.