STANDARD: Ethical Autism Research Cultures and Community Engagement

标准：自闭症研究道德文化和社区参与

• 批准号: 1737149
• 负责人: Chloe Silverman
• 金额: $ 39.96万
• 依托单位: Drexel University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1737149&HistoricalAwards=false
• 关键词: STANDARD; Ethical; Autism; Research; Cultures

Autism stakeholders, including parents, people with autism, and educators, agree that community engagement is important for the ethical design of autism research. This project will analyze how involving members of stakeholder groups in autism research affects how researchers design their studies and present their research. This proposed study will examine what values and concepts related to research and disability are important to autism stakeholders and how community engagement with these values will impact research output. Findings from this project could lead to increased inclusion and participation of people with disabilities in scientific research. It could contribute to improving public understanding and reception of that research. This project will aim to establish best practice guidelines for generating an ethical culture of autism research. It will train graduate students in qualitative research methods and research design ethics. The research outcomes will be of interest to patients, families of patients, health care providers, researchers and administrators.This study investigates to what extent autism researchers include autism stakeholder groups in the design phase of their research, as well as inclusion's effects on research output. It will contribute to the sociological and ethical literature on autism research, STS studies of values and epistemological frameworks, and bioethics. The PIs will employ a sequential mixed methods research design, including a survey of U.S. autism researchers working on basic biomedical research, epidemiology, and services research to identify researchers who utilize community involvement approaches ranging from CBPR (Community Based Participatory Research) to advisory boards, as well as those with no interest in community engagement. Based on survey responses, researchers will be split into two groups, those who report having used any community engagement approaches in their research and those who did not. The survey will be followed by structured interviews to assess attitudes and beliefs (e.g., a social versus a medical model of disability or an orientation to autism across the lifespan rather than a childhood focus) related to autism research. Lastly, a textual analysis will be conducted of interviewed researchers' publications to assess whether researchers' commitment to community engagement in the design phase of research is associated with different research methods, frames of analysis, conclusions, or products.

自闭症利益相关者，包括父母，自闭症患者和教育工作者，他们同意社区参与对于自闭症研究的道德设计很重要。该项目将分析自闭症研究中利益相关者群体参与的成员如何影响研究人员如何设计研究并介绍他们的研究。这项拟议的研究将研究哪些与研究和残疾相关的价值观和概念对自闭症利益相关者至关重要，以及社区与这些价值观如何影响研究成果。 该项目的发现可能导致残疾人在科学研究中的纳入和参与。它可能有助于提高公众对该研究的理解和接受。该项目将旨在建立最佳实践指南，以产生自闭症研究的道德文化。它将培训研究生定性研究方法和研究设计伦理。患者，患者家庭，医疗保健提供者，研究人员和管理人员的研究结果将引起人们的关注。这项研究研究了自闭症研究人员在研究阶段在何种程度上包括自闭症利益相关者群体，以及包容性对研究成果的影响。它将为自闭症研究，对价值观和认识论框架的STS研究以及生物伦理学的社会学和道德文献做出贡献。 PI将采用顺序混合方法研究设计，包括对从事基本生物医学研究，流行病学和服务研究的美国自闭症研究人员的调查，以识别利用社区参与方法的研究人员，从CBPR（基于社区的参与性研究）到顾问委员会，以及对社区互动的兴趣。根据调查的回答，研究人员将分为两组，那些报告在研究中使用任何社区参与方法的人和那些没有社区参与的方法。该调查将进行结构化访谈，以评估态度和信念（例如，在整个生命周期而不是儿童期的自闭症的残疾与自闭症的医学模型）中与自闭症研究有关。最后，将对接受采访的研究人员的出版物进行文本分析，以评估研究人员在研究阶段对社区参与的承诺是否与不同的研究方法，分析框架，结论或产品有关。