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

Graduate and Undergraduate Researchers of UCEER (GURU)

UCEER (GURU) 研究生和本科生研究员

基本信息

批准号：
10555985
负责人：
Madison K Kilbride
金额：
$ 21.15万
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 2025-04-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10555985
关键词：
Academia Address Advocate Affect Communities Decision Making Disabled Children Disabled Persons Discipline Drops Educational workshop Enrollment Environment Faculty Fostering Funding Future Generations Genetic Medicine Goals Grant Individual Institution Mentors Mentorship Monitor Parents Persons Policies Readiness Research Research Personnel Research Project Grants Research Support Resources Rights Scholarship Science of genetics Self Determination Students Training Travel Underrepresented Students Universities Utah Writing career child bearing design disability disabled students ethical, legal, and social implication experience faculty mentor genetic technology genetic testing graduate student higher education interest member peer peer coaching phrases prenatal programs responsible research conduct skills social integration symposium technology development 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. 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.

项目总结/摘要几十年来，"没有我们，就没有我们"这句话一直指导着残疾人权利倡导者。基本前提关于残疾的对话，影响残疾人的政策决定，影响残疾人的技术发展应该包括残疾人社区的成员， that they can bring带来their其lived生活experience经验with disability残疾to the table表. "没有我们，就没有我们" 特别是与遗传科学和遗传医学领域有关，因为它提供了一系列针对这些做法的残疾人批评。例如，批评者认为产前基因检测，部分用于促进关于生育残疾儿童的决定，赞同残疾是应该避免而不是适应。父母对遗传结果的决定残疾人倡导者警告说，测试中经常得到关于残疾人生活的不良信息，问题尝试让那些认为自己有残疾的人参与有关道德、法律的和遗传技术、政策和实践的社会影响（ELSI）受到阻碍，被认定为残疾的学生正在以越来越高的速度接受高等教育，这些学生辍学率也更高。长期的指导计划是解决这种保留的一种方法问题;特别是，将那些认为自己有残疾的学生纳入导师制的项目网络与多个导师在近同行和教师水平，并与残疾和没有残疾，已经证明是有效的。这些方案促进社会融合、自决和目标感。的犹他州大学的UCEER（GURU）研究生和本科生研究人员计划的目标是继续为残疾本科生（每年2名）和研究生（每年2名）提供指导，研究和课程资源，促进他们成为ELSI成员的进步社区导师资源包括一个导师网络，其中包括一个当地的项目教师导师，在不同机构的外部成员谁也确定为有残疾，近同行导师，和 GURU导师谁监控他们的整体进展。研究资源包括参与机会参与一个或多个ELSI研究项目，然后支持在当地一个研究座谈会和全国性学术会议。课程资源包括入学，跨学科ELSI课程，负责任地进行研究的培训，以及赠款写作讲习班。