GURU: Graduate and Undergraduate Researchers of UCEER

项目概要/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。批评者认为，产前基因检测，部分用于 为了促进关于生育残疾儿童的决定，赞同残疾是一种 避免而不是适应。一项遗传政策，建议测试或筛选某些 一些残疾倡导者也认为这份名单是可疑的，因为这份名单是一份隐含的 赞同这样一种观点，即存在某些使生活不值得过或过度的特征， 给家庭和社会带来负担。父母决定基因测试的结果，残疾 倡导者还警告说，他们经常得到关于残疾人生活情况的贫乏信息。 尝试让残疾人参与有关道德、法律的和社会影响的对话 遗传技术、政策和做法受到阻碍的事实是， 残疾学生接受高等教育的比例越来越高，这些学生也在高等教育中辍学。 rates.长期导师计划是解决这一保留问题的一种方法;特别是， 将残疾学生嵌入到一个由多位导师组成的导师网络中， 事实证明，无论是残疾人还是非残疾人，都是有效的。这些计划促进社会 融合、自决和使命感。这个项目的目标是创建一个程序， 为本科生（2/年）和研究生（2/年）残疾学生提供指导，研究， 课程资源，促进他们的进步，成为专业的成员 ELSI学者社区。导师资源包括一个导师网络， 研究导师，一个有残疾的导师，一个接近同伴的导师，和一个管理导师谁监测 他们的整体进步。研究资源包括参与一项或多项ELSI研究的机会 项目，然后支持在当地研究研讨会和国家研讨会上展示该研究的结果 学术会议。课程资源包括跨学科ELSI课程的注册， 关于负责任地进行研究的课程，以及一个赠款写作讲习班（为研究生）或一个 研究生入学考试预备课程（本科生）。

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).