Graduate and Undergraduate Researchers of UCEER (GURU)

University Of Utah, Salt Lake City UT

Investigators

Linked publications & trials

Abstract

PROJECT SUMMARY/ABSTRACT The phrase “nothing about us without us” has guided disability rights advocates for decades. The basic premise of the phrase is that conversations about disability, policy decisions affecting people with disabilities, and technological developments impacting disabled people should include members of the disability community, so that they can bring their lived experiences with disability to the table. “Nothing about us without us” is particularly relevant to the domain of genetic science and genetic medicine because it informs a range of disability-oriented criticisms aimed at those practices. For example, critics argue that prenatal genetic testing, used in part to facilitate decisions about bearing children with disabilities, endorses the idea that disability is something to be avoided rather than accommodated. Parents making decisions about the result of a genetic test, disability advocates warn, are often given poor information about what it is like living with the disability in question. Attempts to involve people who identify as having disabilities in conversations about the ethical, legal, and social implications (ELSI) of genetic technologies, policies, and practices are hindered by the fact that, while students who identify as having disabilities are enrolling in higher education at increasing rates, those students are also dropping out at higher rates. Long-term mentorship programs are one way to address this retention problem; in particular, programs that embed students who identify as having disabilities into mentorship networks with multiple mentors at the near-peer and faculty levels, and both with and without disabilities, have proven effective. These programs foster social integration, self-determination, and a sense of purpose. The goal of the University of Utah's Graduate and Undergraduate Researchers of UCEER (GURU) Program is to continue equipping undergraduate (2/year) and graduate (2/year) students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community. Mentoring resources include a mentor network that incorporates a local project faculty mentor, an external member at a different institution who also identifies as having a disability, a near-peer mentor, and a GURU mentor who monitors their overall progress. Research resources include the opportunity to participate in one or more ELSI research projects, and then support to present the results of that research at a local research symposium and at national academic conferences. And curricular resources include enrollment in an interdisciplinary ELSI course, training in the responsible conduct of research, and a grant writing workshop.