GURU: A Unique ELSI Pipeline Program for Students with Disabilities
Because ELSI is not confined to a single academic discipline or institutional home, pipeline programs that provide training for an ELSI research career are critical to the longevity of the field of study. These programs can also facilitate the intentional recruitment of contributors from a broad range of disciplines, professional backgrounds, and lived experiences. The National Human Genome Research Institute (NHGRI) supports ELSI research training and career development with grants awarded to institutions that provide placements for students at all levels—from undergraduate through postdoctoral study. We asked James Tabery, PhD, Professor in the Department of Philosophy and Adjunct Associate Professor in the Center for Health Ethics, Arts, and the Humanities in the Department of Internal Medicine at the University of Utah to tell us about the Utah Center of Excellence in ELSI Research (UCEER) Graduate and Undergraduate Researchers of UCEER (GURU) Program. Graduates of the GURU Program, which is supported by the NHGRI R25 Diversity Action Plan (DAP) funding mechanism, have taken the ELSI training they received on to graduate study and a wide variety of careers.
CERA: You designed the GURU Program to give disabled students at the University of Utah the opportunity to join a research team focused on the ELSI of genetics and genomics. What can you tell us about your inspiration for creating this first-of-its kind program?
Dr. Tabery: There has been a long-standing tension between medical genetics and members of the disability community. Medical genetics, disability scholars argue, has traditionally been invested in facilitating a world in which fewer people have disabilities via the use of technologies like prenatal screening and preimplantation genetic diagnosis. For many of these critics of medical genetics, the eugenic idea that the world would be a better place with fewer disabled people never really left science and society. The voices of people living with disabilities have traditionally, and are still, left out of the medical and ELSI conversations about reproductive genetics. That’s a problem. We created the GURU Program, in part, to foster a newer generation of ELSI scholars who have that lived experience with disability, and we believe the genetics and ELSI communities will benefit from the perspectives that they bring for years to come.
CERA: Students in the GURU Program are paired with a faculty researcher, paid an hourly wage and an annual stipend to travel to an academic conference, placed in a mentorship network with multiple mentors (at least one of which is a disabled faculty member), offered the opportunity to take ELSI-focused courses, and provided with resources to take a GRE test-prep course. Could you give us some insight into why you selected these specific resources as supports for the students in this program?
Dr. Tabery: The other main goal that we have for the GURU Program is to equip the students with resources that will maximize the chances that they will be able to move on to whatever it is that they want to do next in their academic or career trajectories. The various resources we provide them were selected to give them opportunities to become a member of a research team, present their work at academic conferences, and publish research with their names on the author list. No matter what they want to do next, items like those on their resumes will make them more competitive for that next step.
CERA: Could you tell us a bit more about the design and composition of the mentor network for each GURU student?
Dr. Tabery: Each student in the GURU Program works with a faculty research mentor, external mentors, a near-peer mentor, and a GURU mentor. The faculty research mentor is an ELSI scholar conducting ELSI scholarship. Traditionally, this person has been a faculty member at the University of Utah—in philosophy, law, pediatrics, OB-GYN, genetic counseling, communication, nursing, disability studies—who then brings the student into their research team or project. The external mentors are ELSI scholars who are not located at the University of Utah and who identify as having a disability. These mentors bring their lived experience with disability to the community of students and have been incredibly helpful to them when it comes to things like navigating ableism in the academic environment.
In a typical year, we have two graduate students and two undergraduate students in the GURU Program; this allows for pairing up the later-career students as near-peer mentors with the earlier-career students. With so many people involved, there’s always a risk that too many moving parts become unwieldy, and that’s where the GURU mentor serves to keep everybody on the same page and working together towards helping the students flourish. I’ve served in that administrative mentorship role for the life of the program.
CERA: How are students recruited to the GURU program?
Dr. Tabery: We do a lot of outreach in the fall each semester: communicating with academic advisors, meeting with units on campus like the Center for Disability and Access, contacting specific programs like Disability Studies, sending out emails to our ELSI community of faculty, staff, and students at the University of Utah. That has historically allowed us to get a strong pool of applicants, which we then review and interview in the spring, looking to finding our cohort for the following year.
CERA: We understand that the program has admitted students each year since 2018 and is currently funded through 2025. How many students have benefited from the GURU program so far?
Dr. Tabery: The intended model is 4 students/year (2 graduate and 2 undergraduate students), but that isn’t written in stone. One year, we had 5 students. Another year, we had 3 undergraduates and 1 graduate student. Also, a student who is thriving in the program and wants to continue, can apply to join for a second year. That’s been great because then, in any given year, there’s a mix of students who are new to the program and those who have one year of experience. There have been about 15 students in the program over the years.
CERA: What examples of GURU student accomplishments come to mind?
Dr. Tabery: So many! Some accomplishments are of the traditional academic sort: co-authored publications in peer-reviewed journals, speaking presentations at the NHGRI trainees meeting, and interviews with journalists interested in the program. Other accomplishments are more professional in nature: acceptance into a genetic counseling program, a position as an assistant professor in a department of communication, a job with AncestryDNA. Other accomplishments are personal: the validation that comes from being surrounded by a cohort of students and mentors who experience disability in life and academia and demonstrate that facing challenges presented by ableism is not an experience that is unique to them.
CERA: The GURU program is designed to maximize student potential for moving on to the next stage of their academic or professional career. What are former GURU students doing now?
Dr. Tabery: Our students have gone on to incredible things: graduate school in communication and philosophy, professional school in medicine and law, healthcare positions in genetic counseling and nursing, jobs in industry, positions in research administration, tenure-track jobs in academia, and disability advocacy roles. In each case, we see our GURU students bringing their ELSI ideas, experiences, and expertise to these domains.
CERA: How has the program navigated individual student preferences about sharing disability status or centering disability as part of one’s identity?
Dr. Tabery: This was an issue that we focused on from the very beginning of the program, at the concept and design stages. Since people living with disabilities have very different ideas about how central that is to their identities and how public or private they want to be about it, we let each student decide for themselves how they want to navigate it, and then we support their decision. Our default mode is that we assume their disability status and even their participation in the program is private, unless they tell us that they are comfortable with that information being shared. These decisions are very much student-driven and we have tailored the program to each student.
CERA: Have you encountered any difficulties integrating this program into the academic research environment?
Dr. Tabery: Yes, because much of the academic research environment is ableist by design. We can support our GURU students with all sorts of curricular and financial resources, but we can’t prevent their Biology 101 teaching assistant from saying, “Funny, you don’t seem like somebody with a disability.” We can also surround our GURU students with a robust mentorship network, but we can’t know which of their professors think that students who are asking for disability accommodations are looking for a “free ride”. Many of the challenges are of this sort. It is frustrating to see what you can and can’t shape constructively.
CERA: What have you learned about ableism in academia since you started this program?
Dr. Tabery: How widespread it is. I do not identify as having a disability, so I never had the experience of navigating a university environment with that as part of who I am. It was only when I started working with the students, learning of the challenges, frustrations, and flat-out discriminations that they experienced, that my awareness was raised. I think my pre-GURU perspective is common in academia. Most students, staff, and faculty aren’t anti-disability; they’re just ignorant of or indifferent towards it (I say “most” and not “all” because there certainly are overtly ableist people out there). A lot of what we do to integrate the program into campus is education and humanization—drawing attention to the systemic things that make academic flourishing difficult for people with disabilities in a university environment.
CERA: What impacts on ELSI research do you hope for, if the GURU Program recruits new scholars to the ELSI research community?
Dr. Tabery: I hope to see attention to disability become the norm, not the exception, in ELSI spaces. I want there to be so much attention to disability at an ELSI conference that you can’t say “oh, that’s the disability session” because there’s some consideration of disability in all the sessions. I want there to be so much presence among the disability community in ELSI research that we can just take it for granted that our physical spaces, scholarship, and forms of communication are accommodating everyone.
CERA: What advice do you have for others who would like to create a pipeline program for scholars who are underrepresented in ELSI research?
Dr. Tabery: The disability rights movement, starting in the 1980s, embraced the idea of “nothing about us, without us”. The basic notion was that conversations about disability, plans that will affect people with disabilities, and political or scientific developments that will impact disabled lives *must* include the perspectives of people living with disabilities. My main recommendation is to get people with disabilities involved in the planning and implementation of your pipeline program, as early as possible. Each disability-focused program like GURU will have to be tailored to the unique logistical, financial, and social constraints of an institution. How you navigate those constraints and balance trade-offs should be shaped by the disability community members who stand to benefit from the program.
CERA: You funded the program with an R25 Diversity Action Plan (DAP) grant from the National Human Genome Research Institute. This funding mechanism is intended to increase diversity amongst scientists and scholars studying genomics and its ethical, legal, and social implications. Could you please share any advice you have for others who may be considering a DAP application?
Dr. Tabery: Be creative in thinking about how a particular DAP can thrive at your particular institution. There are many successful DAPs out there, and each one needed to be tailored to the host institution. Don’t try to “copy” what you see somewhere else and “paste” it at your institution. All the DAPs before our GURU Program came along were focused on underrepresented racial and ethnic minority groups. When we were considering setting up a DAP at Utah, we saw those very successful programs and admired them, but also knew that we would have difficulty replicating that in Utah given the unfortunately homogenous racial demographics in the state. There is, however, a thriving disability community in Utah generally and at the University of Utah specifically, and much of the ELSI research conducted at Utah had some attention to disability issues. We saw this as an opportunity to approach a DAP differently, in a way that still met the noble demands of the program, but with the resources that the Utah ELSI community could offer. I encourage others interested in developing a DAP to approach it similarly—focus on what makes your institution and your ELSI community unique, and then consider how a DAP could function best in that environment.
Check out the NHGRI Diversity Action Plan (R25) notice of funding opportunity and upcoming proposal submission deadlines and our grantsmanship training webinars on ELSIhub.org.
