Promoting the integration of genetic counseling education and research across the spectrum of learners at a large academic institution

Abstract

Genetic counselors are valuable members of research teams and are increasingly taking leadership roles in major research trials. While the field of genetic counseling has explored a doctoral degree several times, the terminal degree is still a master’s level. Genetic counseling training programs provide research training, but many genetic counselors desire additional opportunities to develop expertise. To address the gaps in the availability of research training before and after obtaining genetic counseling degrees, we applied for and received a grant centered around three aims: (1) develop an undergraduate minor in genomics and human health with a research component, (2) promote a rigorous genetic counseling research program for training to practice genetic counselors, and (3) initiate a combined PhD program in Molecular, Cellular, Developmental Biology, and Genetics (MCDB&G) with a track in genetic counseling. We describe each of these components and early progress toward these aims. As each individual aim is bearing fruit, the next challenges are implementing more crossover between people in each aim and distilling the lessons learned to see if this program could be replicated at other sites.

1 |. INTRODUCTION

Genetic counselors have long been vital members of translational research teams and increasingly their expertise is valuable in leading, designing, and implementing large clinical and research program project applications (Zierhut & Austin, 2011). The terminal degree in genetic counseling is a master’s (MS) degree, however, doctoral degrees in genetic counseling have consistently been of interest to the field over 40 years (Atzinger et al., 2007; Clark et al., 2006; Gaupman et al., 1991; Wallace et al., 2008). Additional research training, such as gained in a PhD program, is distinct from the roles of clinical genetic counselors and requires separate competencies than those outlined for genetic counselors (Wallace et al., 2008). Genetic counselors may pursue doctoral training in other disciplines such as genetics, translational health sciences, neuroscience, human genetics, epidemiology, public health, and education. While doctoral degrees are one way to gain research training, expanded skills training not specific to a PhD program have been modeled to help genetic counselors navigate professional development opportunities (Baty et al., 2016).

Separately, research opportunities are increasingly sought after by undergraduates prior to entering genetic counseling programs (Gerard et al., 2019; Hyland & Dasgupta, 2019; Neogi et al., 2020). Many benefits exist for participation in undergraduate coursework and research to build expertise and skills to apply for training positions in the genetics services workforce (Russell et al., 2007). Thus, there are unmet needs in the field for undergraduate and post-baccalaureate students seeking to garner research experiences related to genetics and genetic counseling.

Genetic counseling training programs are at the center of research pathways into the profession and could assist in building the research expertise of practitioners and translational researchers to be future research mentors. To address the gaps in the availability of research training before and after obtaining genetic counseling degrees, we proposed establishing robust genetics education pathways that begin with undergraduate education and extend to graduate training and advanced genetic counseling skills and research skills development.

This vision had three genetic counseling-focused aims: (1) develop an undergraduate minor in genomics and human health with a research component, (2) promote a rigorous genetic counseling research program for training to practice genetic counselors, and (3) initiate a combined PhD program in Molecular, Cellular, Developmental Biology, and Genetics (MCDB&G) with a track in genetic counseling.

2 |. CREATING RESEARCH TRAINING OPPORTUNITIES FOR A SPECTRUM OF LEARNERS INCLUDING UNDERGRADUATES, GENETIC COUNSELING FELLOWSHIPS, AND DOCTORAL STUDENTS

In 2018, the Program Director and Assistant Program Director for the Genetic Counseling program with the support of the Department Chair submitted an internal grant to support the outlined goals to the Academic Investment Education Program (AIEP). The initiative was awarded a one-time, 3-year grant of $650,000 to accomplish the following activities:

1. An undergraduate minor in Genomics and Human Health—The genetic counseling program successfully hired a non-tenure track lecturer to facilitate the development of a 16-credit undergraduate minor. This person served as interim director of the minor and worked with the Department of Genetics, Cell Biology and Development’s Director of Undergraduate Studies to navigate the college- and university-level committees that review curricular proposals. The core components of the minor were to be human genetics, medical ethics, multicultural engagement, and experiential research opportunities.

2. Promote a rigorous genetic counseling research program and training—A network of researchers at the University of Minnesota were brought together to outline core genetic counseling research areas, training experiences, and outcomes of training. The team submitted a R25 National Human Genome Research Institute grant creating the first of its kind 2-year fellowship designed to provide four genetic counselors with advanced research training. Using a train-the-trainer model, the fellowship is intended to prime fellows to gain the skills to become mentors for future genetic counseling researchers.

3. Initiate a combined PhD with a track in Genetic Counseling—The overarching mission of the combined degree program is to train academic research leaders that bring discoveries in genetics and genomics to the front line of precision medicine research. The PhD and MS Curriculum Committees collaborated to outline a 3-year combined didactic course schedule which included doctoral coursework in genetics; biochemistry; and molecular, cell, and developmental biology and genetic counseling curriculum to reduce the overall in-class time by 1 year. The Assistant Program Director met with laboratory principal investigators who were open to joint degree students to explain the program and assess feasibility. Several modifications to the PhD program were necessary including changing the oral and preliminary exams times and tailoring specialty fieldwork rotations to reflect student laboratory interests (e.g., tailoring specialty rotations to focus on the student’s laboratory interests and building related skills such as genome analysis, variant interpretation, and report writing). Funding for 1 year of training was provided to students in the pilot program.

3 |. OUTCOMES AND DELIVERABLES

The outlined plan strengthened genetics education and research across the spectrum of learners in the following outcomes and deliverables.

3.1 |. Health and genomics minor

The Health and Genomics minor was officially proposed in the Spring 2020, provisionally approved in the Fall 2020, and officially added to the course catalog in the Spring 2021. The curriculum includes four required courses: a basic biology prerequisite and three upper-level courses. A new course designed for the minor, Culture, Identity, & Precision Medicine, explores the intersectional identities of providers and patients to understand individual and systemic dynamics in genetics settings. A minor-specific adaptation of an established human genetics course was developed with a writing intensive version of the course that focuses on writing for the variety of audiences and purposes genetic counselors engage with (e.g., technical writing for lay public, persuasive writing to advocate for patients and/or causes). Students in the minor also take Ethical and Legal Issues in Genetic Counseling concurrently with the MS course but with modifications. There is a directed research component in which students participate in ongoing faculty or graduate student research projects, or have the option of combining this experience with an honor’s thesis to conduct their own study.

Initial enrollments in all new courses were promising and have increased by ~50% each time they have been offered (once per year). As of May 2023, 15 students are enrolled in the minor and an additional 20 have expressed interest. The enrolled students all plan to pursue careers in genetic counseling and see the minor as a positive opportunity to better understand the field. Additional reasons for enrolling in the minor included the belief it will improve their odds of getting into graduate school, access to genetic counseling-specific coursework as an undergraduate, the opportunity to take courses from genetic counseling faculty, and the ability to fit the minor around their current academic plan. The first student with the minor to graduate occurred in May 2023, and she is pursuing a career in genetic counseling.

Early assessment of the success of the minor in recruitment has been strong. The minor has the 8th highest enrollment of 13 minors in the College of Biological Sciences despite being the newest. Of the most recently approved minors that predate Health and Genomics, those launched in 2020 had 19 (Genetics) and 4 (Cellular Biology) students enrolled on 5/10/23, and the two minors launched in 2019 had 29 (Computational Biology) and 4 (Cellular/Molecular Neuroscience).

3.2 |. Genetic counseling fellowship in research training (GC-FIRST) program

The R25 Grant, entitled GC-FIRST Program, was funded by the National Human Genome Institute. This 2-year fellowship opportunity is designed to provide four practicing genetic counselors with advanced research training. As part of the GC-FIRST Program, fellows will be responsible for completing structured coursework, 12 research training modules, 10 modules from the National Center for Faculty Development and Diversity, and practical genetic counseling research experiences. Additional experiences will include conducting a systematic review, conducting an original empirical study, attending NSGC committee meetings, mentoring genetic counseling student research, networking with research genetic counselors, and developing materials to facilitate securing academic and/or industry research positions. Throughout their training, the fellows work closely with their advisor, who provides tailored support according to an individualized development plan. Advisors mentor their fellows in material (e.g., providing expertise, giving feedback on drafts, sharing materials or templates), connective (e.g., introducing fellows to potential collaborators and subject matter experts), reflective (e.g., establishing writing plans, defining mentorship needs, clarifying motivations), and preparatory (e.g., establishing programmatic lines of research, writing research statements, practicing job talks) ways.

The program accepted the first two fellows in January 2023. As of May 2023, the fellows have completed four training modules, submitted a research grant, began volunteering with national committees, and joined two MS student thesis committees. Research training module evaluations reported an appropriate balance of breadth and depth of content, curriculum that is appropriately tailored to their developmental level, assignments that are helpful for future use, and overall the fellows’ engagement has been high in weekly meetings and training activities.

3.3 |. Joint PhD/MS program

The pilot joint PhD/MS program has admitted four students. The first PhD/MS genetic counseling student was accepted in December 2019 and a second in 2020, and two additional students in 2021. We are continually evaluating the program and working on ways to improve it for future iterations. Publicizing the joint program resulted in many one-on-one meetings with faculty and students to outline the program details. While expected, students were challenged in different ways to navigate both laboratory and clinical roles throughout the first 3 years when program requirements overlap. For the next iteration of the program, we plan to offer the MS degree separately from the PhD to avoid the overlap in training and are considering separating the admissions process to allow all genetic counseling students an opportunity to apply. We are still working to secure external funding and to restructure the program to be sustainable without a funding source.

3.4 |. Overall lessons

In addition to these early reports of a primarily descriptive nature, we offer a few lessons we learned in developing this innovative approach to broadening the research capacity of genetic counselors. The first is to engage with institutional expertise as early as possible to understand the norms and rules of your institution. For example, as primarily graduate faculty, we were used to a high degree of autonomy in assembling curricula within our program. The undergraduate curriculum has a much more interconnected system of review and oversight due to a major or minor only being part of the graduation requirements. Having the Director of Undergraduate Studies for our department to shepherd us through the process was invaluable, especially as we continually thought we were “done” with the approval process only to learn there was another committee that needed to review the proposal and new forms to complete.

The second lesson is to be thoughtful about structuring programs to conform to the necessary time for research mentorship and in ways faculty effort is measured at your institution. While research experiences are an integral part of the minor, there are limited budgets for projects that do not yet have extramural funding which is the case for genetic counseling projects. By building directed research credits into the minor, we created a structure that gives the students recognition for their time and skills gained and also recognizes the faculty’s effort of supervising undergraduate researchers that can be cataloged in a manner conducive to effort in faculty annual reports.

Finally, while our intention is to strengthen the genetic counseling education and research enterprise, our last piece of advice is to collaborate broadly on research endeavors. Our new initiatives have put us in contact with numerous faculty, students, and administrators at our own institution that we rarely connected with previously, as well as outside our institution. For example, the fellowship program has provided opportunities to collaborate with faculty and industry partners across the country. These connections may foster ongoing collaborations, which then fuel expanded research and training options for students, fellows, and professional researchers as they leave our programs and begin to mentor others.

4 |. RIGOROUS GENETIC COUNSELING RESEARCH SUPPORTS EVIDENCE-BASED GENETIC COUNSELING EDUCATION AND DELIVERY OF QUALITY SERVICES

We have started connecting these threads to create a better-integrated research collaboration experience. Students in the minor are serving as research assistants for the MS thesis projects, gaining valuable experiences they will bring to the field and forming mentorship relationships with graduate students and faculty along the way. Masters’ students are learning to supervise more novice researchers which gives them a sense of what fieldwork supervision and working in research teams professionally can look like. Research fellows are helping shape MS theses as well as connecting to the broader genetic counseling research community. The joint PhD students are making connections between genetic counselors and genetics faculty.

In the upcoming years, we hope to further connect each of the main initiatives outlined above. To do so, we will more closely connect the undergraduates, MS students, fellows, and PhD/MS students to work collaboratively on larger research projects. As we work to develop structures that support this interaction, one possible model is communities of practice (CoP). Originally developed by Lave and Wenger (1991) to describe apprenticeship relationships, the term now typically refers to a specific domain of interests shared among a group, the community that comes together to pursue that interest, and a shared set of resources to help perform the practice (Wenger et al., 2002). CoPs have been established in healthcare (e.g., Ranmuthugala et al., 2011) and higher education (e.g., Hodgkinson-Williams et al., 2008), though critiques of CoPs are also present in a number of fields (e.g., Roberts, 2006). We plan to consider a broad variety of structures as we determine what fits best in our particular circumstances.

With more crossover of learning and intentionality of mentoring opportunities led by the Genetic Counseling Program, our research team will follow a centralized research agenda that fosters a professional research community with a spectrum of learners starting from undergraduates and extending to professionals. We see this as a way to eventually evaluate if similar research programs could serve as centers for excellence in genetic counseling research. By creating a foundation of evidenced-based genetic counseling research, this type of program also has the potential to elevate the research profile of the genetic counseling field as a whole.