Graduate and Undergraduate Researchers of UCEER (GURU)

项目摘要/摘要 几十年来，这句话一直指导着残疾人权利倡导者。基本前提是 这句话的意思是关于残疾的对话，影响残疾人的政策决定，以及 影响残疾人的技术发展应包括残疾人社区的成员，因此 他们可以把他们的残疾生活经历带到谈判桌上。“没有我们，我们什么都不是” 尤其与遗传科学和遗传医学领域相关，因为它提供了一系列 针对这些做法的以残疾为导向的批评。例如，批评人士认为，产前基因检测， 部分用于促进关于生育残疾儿童的决定，支持残疾是 应该避免而不是迁就的东西。父母对基因突变的结果做出决定 残疾倡导者警告说，测试经常被给予关于在美国与残疾人士一起生活的糟糕信息 问题。 试图让那些自认为有残疾的人参与关于道德、法律和 基因技术、政策和实践的社会影响(ELSI)受到以下事实的阻碍：虽然 自认为有残疾的学生正在以越来越高的比率进入高等教育，这些学生 退学的比例也更高。长期的导师计划是解决这种留住问题的一种方式 问题；特别是将自认为有残疾的学生纳入指导计划的计划 在近同行和教职员工层面上有多位导师的网络，有残疾的和没有残疾的都有， 已经被证明是有效的。这些计划促进了社会融合、自决和使命感。这个 犹他大学UCEER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(2年)和研究生(2年)提供辅导， 促进他们成为ELSI成员的研究和课程资源 社区。辅导资源包括一个导师网络，其中包括一位当地的项目教师导师，以及 另一家机构的外部成员，也被确认为有残疾、近乎同行的导师和 监督他们整体进度的导师。研究资源包括参与的机会 在一个或多个ELSI研究项目中，然后支持在当地的 在全国学术会议和研究研讨会上。课程资源包括参加 跨学科的ELSI课程，负责任的研究行为培训，以及赠款撰写研讨会。

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.