# GURU: Graduate and Undergraduate Researchers of UCEER

> **NIH NIH R25** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2021 · $108,000

## 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. 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. A genetic policy that recommends testing or screening for certain
conditions but not others is also judged suspect by some disability advocates because the list is an implicit
endorsement of the idea that there are certain traits which make a life not worth living or excessively
burdensome to families and society. Parents making decisions about the result of a genetic test, disability
advocates also warn, are often given poor information about what it is like living with the disability in question.
Attempts to involve people with 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 with
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 with disabilities into a mentorship network 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 this project is to create a program that will
equip 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 professional
community of ELSI scholars. Mentoring resources include a mentor network that incorporates a faculty
research mentor, a mentor with a disability, a near-peer mentor, and an administrative 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, a
course on the responsible conduct of research, and a grant writing workshop (for graduate students) or a
graduate record examination test prepar...

## Key facts

- **NIH application ID:** 10149375
- **Project number:** 5R25HG010020-04
- **Recipient organization:** UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
- **Principal Investigator:** James Tabery
- **Activity code:** R25 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $108,000
- **Award type:** 5
- **Project period:** 2018-06-22 → 2023-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10149375

## Citation

> US National Institutes of Health, RePORTER application 10149375, GURU: Graduate and Undergraduate Researchers of UCEER (5R25HG010020-04). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10149375. Licensed CC0.

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