GURU: Graduate and Undergraduate Researchers of UCEER

GURU：UCEER 研究生和本科生研究人员

• 批准号: 9923684
• 负责人: JEFFREY R. BOTKIN
• 金额: $ 10.8万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 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/9923684
• 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

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).

项目摘要/摘要 几十年来，“没有我们的无关我们无所事事”的短语指导了残疾权利的倡导者。基本前提 一词是关于残疾人的对话，影响残疾人的政策决策以及 影响残疾人的技术发展应包括残疾人社区的成员，因此 他们可以将残疾人的现场经历带到桌子上。 “没有我们，我们什么都没有”是 与遗传科学和遗传医学领域特别相关，因为它为一系列 针对这些实践的面向残疾的批判主义。批评家认为，产前基因检测，部分使用 为了决定残疾儿童的最爱决定，请认可残疾是一种事情 避免而不是容纳。建议对某些测试或筛查进行测试或筛查的遗传政策 条件，但没有其他残疾倡导者也判断嫌疑人，因为该清单是隐式的 认可某些特征使生活不值得生活或超凡的思想的观念 对家庭和社会负担沉重。父母决定基因检测，残疾的结果 倡导者也警告说，通常会得到有关与所讨论残疾的生活的不良信息。 试图让残疾人参与有关道德，法律和社会影响的对话 （ELSI）遗传技术，政策和实践受到了以下事实的阻碍： 残疾人正在以越来越多的速度接受高等教育，这些学生也在更高 费率。长期精神计划是解决此保留问题的一种方法；特别是程序 那是将残疾学生嵌入到近点的多种心理的指导网络中 教师级别以及有和没有残疾的级别都被证明有效。这些计划促进社交 整合，自决和目的感。该项目的目标是创建一个将 装备本科生（2/年）和毕业生（2/年）心理，研究和 课程资源促进他们发展成为专业人士的成员 Elsi学者社区。指导资源包括结合教师的心理网络 研究导师，有残疾的导师，近per的导师和监视的行政导师 他们的整体进展。研究资源包括参加一项或多项ELSI研究的机会 项目，然后支持在本地研究研讨会和国家 学术会议。课程资源包括参加跨学科ELSI课程的入学 负责任的研究课程以及赠款写作研讨会（针对研究生）或 研究生记录考试考试预备课程（针对本科生）。