Shana L. Merrill, MS, LCGC®, is a genetic counselor at the University of Pennsylvania an adjunct faculty instructor and the Jefferson College of Biomedical Sciences Genetic Counseling Program. She received the ABGC Research Grant for her project, “Defining macro-level ELSI knowledge and competency in genetic counseling practice, research, and training.”
Why did you choose to become a genetic counselor?
I chose to become a genetic counselor because I wanted a dynamic and challenging career that would encourage me to grow as a person and provide the opportunity to help others through difficult times.
You have provided genetic counseling services in both urban and rural settings. What are some of the similarities and differences in these two practice environments?
The main similarity between providing care in rural and urban settings is that the underlying goals and practice of providing patient-centered, empathetic genetic counseling services tailored to the person or family sitting in front of you does not change. The differences between practicing in rural and urban environments are most often evident in differing attitudes regarding the goals of medicine and prioritization of risks, as well as decreased access to advanced subspecialty care for patients (and fellow providers) in rural settings. In my personal experience, genetic counselors in rural settings have to become comfortable practicing as generalists, outside of circumscribed subspecialties and traditional job roles, more so than in urban settings.
How was your interest in qualitative research shaped by your clinical practice, and how did you develop your skill set in this area?
I was unsettled by the disconnect between efforts to codify and understand patient experiences using scales and other quantitative measures and the complexity of the medical and social experiences of the patients I met. The academic literature wasn’t doing justice to the variation and evolution of patient experiences over time. That is what sparked my interested in qualitative research – the wide variety of qualitative methods are designed specifically to capture complex, lived experiences of people. In my experience, these approaches genuinely engaged with the nuanced ways that genetic testing and counseling outcomes impact patients’ lives compared to the quantitative studies I was reading. I started to understand why and how qualitative research involves more than adding an open-ended text box at the end of a quantitative study and calling the approach ‘mixed methods.’
In a two-year GC training program, learning complex and rigorous research methods is a challenge, yet is necessary for our profession to thrive. My desire to learn how to conduct qualitative and mixed methods research to address the root causes and complex outcomes I witnessed in the clinic lead me to enroll in a PhD program in social policy and practice at the University of Pennsylvania, with an advisor who specialized in qualitative research. I took a number of PhD-level courses to learn qualitative research design and analysis, and I attended research boot camps teaching mixed methods design to interprofessional groups. I worked as a research fellow during my PhD program which gave me the opportunity to apply what I was learning in the classroom. I was part of an NCI research team analyzing qualitative data from a longitudinal study of families with Li-Fraumeni Syndrome. This experience was important for gaining real-life experience working with large, complex qualitative data sets and transdisciplinary qualitative research teams.
You have been awarded the ABGC Research Grant for your project entitled “Defining macro-level ELSI knowledge and competency in genetic counseling practice, research, and training.” How did you select this topic, and what are your research aims?
I am honored to have received this grant. I tend to be a “big picture” thinker. As genetic counselors, we are often trained to focus on individual patient practice and research issues (micro-level). Yet, institutional structures, organization practices in medicine, and cultural values surrounding health care and genetics across populations significantly influence patient outcomes downstream, particularly in relationship to health equity and diversity-related concerns. There have been calls for GCs to produce research regarding macro- (social, cultural, and political systems) and meso- (community and institutional systems) level ELSI topics, and the genetic counseling code of ethics implies we value these lenses. However, it is unclear to what extent GCs are currently equipped and expected to address overarching issues of social justice as part of their professional roles.
This project aims to engage genetic counselors in dialogue with other key stakeholders to define an expanded scope of practice that can be integrated into all levels of genetic counseling care. This program of research will explore potential ways to enhance ELSI training and professional development of genetic counselors, with attention to social justice issues, as well as explore the extent to which participants view genetic counselors’ core professional identity including macro-level and social justice competencies.
What advice do you have for genetic counselors who are considering engaging in research?
The best advice I have for genetic counselors who are considering engaging in research is to follow your passion. Then, surround yourself with experienced researchers (ideally from a variety of fields) who can serve as good research mentors. Research is a long and tedious process if you are not fully invested in the research questions you are seeking to answer or have tenuous relationships with your research team. Additionally, genetic counselors who engage in research often need to self-advocate, just as they advocate for their patients in clinical care. GCs should advocate for protected time to complete research, whenever possible, and to receive appropriate credit for their contributions to research projects (e.g. to be a co-investigator on a study, as opposed to a staff member, if one is contributing significant intellectual property to the project).
Please reach out to me directly at [email protected] if you wish to learn more about this study. Recruitment will begin soon, and I am happy to communicate with anyone interested in participating.