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，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。批评人士认为，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，支持残疾是一种 被回避而不是迁就。一种基因政策，建议对某些人进行测试或筛选 一些残疾倡导者也认为情况可疑，但没有其他情况，因为该列表是隐含的 赞同这样一种观点，即某些特征使人的生活不值得活下去或过得过分 给家庭和社会带来负担。父母对基因测试的结果做出决定，即残疾 倡导者还警告说，他们经常被给予关于与有问题的残疾生活是什么感觉的糟糕信息。 试图让残疾人参与关于道德、法律和社会影响的对话 (ELSI)的基因技术、政策和实践受到阻碍的事实是，尽管拥有 残疾学生在高等教育中的入学率越来越高，这些学生也在高等教育中辍学。 费率。长期指导计划是解决这一留住问题的一种方法；特别是计划 将残疾学生嵌入到一个有多名导师的近距离导师网络中，并 事实证明，无论是残疾的还是非残疾的，教职员工的水平都是有效的。这些计划促进了社会 融合、自决和使命感。该项目的目标是创建一个将 为残疾本科生(2年)和研究生(2年)提供指导、研究和 课程资源，促进他们成为专业人士的一员 ELSI学者社区。辅导资源包括一个导师网络，其中包括一名教师 研究导师，残疾导师，近乎同行的导师，以及监督的行政导师 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，然后支持在地方研究研讨会和国家研究研讨会上展示该研究的结果 学术会议。课程资源包括参加跨学科的ELSI课程，a 关于负责任的研究行为的课程，以及一个补助金撰写研讨会(为研究生)或一个 研究生入学考试预科课程(面向本科生)。