权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

GURU: Graduate and Undergraduate Researchers of UCEER

GURU：UCEER 研究生和本科生研究人员

基本信息

批准号：
10439594
负责人：
James Tabery
金额：
$ 10.8万
依托单位：
UNIVERSITY OF UTAH
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-06-22 至 2023-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10439594
关键词：
Academia Address Advocate Affect Applications Grants Communities Decision Making Development Disabled Children Disabled Persons Discipline Drops Educational workshop Enrollment Environment Faculty Family Fostering Future Generations Genetic Genetic Medicine Genetic Screening Genomics Goals Graduate Record Examination Grant Healthcare Informed Consent Life Mentors Mentorship Monitor Parents Policies Readiness Research Research Personnel Research Project Grants Research Support Resources Rights Scholarship Science of genetics Self Determination Societies Students Technology Testing Training Travel Underrepresented Students Utah Writing career child bearing design disability disabled students ethical legal social implication experience faculty research genetic technology genetic testing graduate student higher education interest member peer peer coaching phrases prenatal programs reproductive responsible research conduct screening skills social integration symposium trait undergraduate student

项目摘要

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 preparatory course (for undergraduate students).

项目总结/文摘