STANDARD: Ethical Autism Research Cultures and Community Engagement

自闭症的利益相关者，包括父母，自闭症患者和教育工作者，都认为社区参与对于自闭症研究的道德设计非常重要。该项目将分析自闭症研究中利益相关者群体的成员如何影响研究人员如何设计他们的研究和展示他们的研究。这项拟议的研究将探讨与研究和残疾有关的价值观和概念对自闭症利益相关者来说是重要的，以及社区参与这些价值观将如何影响研究成果。 该项目的研究结果可能会导致残疾人更多地融入和参与科学研究。它可有助于提高公众对这项研究的理解和接受程度。该项目旨在建立最佳实践指南，以产生自闭症研究的道德文化。它将培养研究生的定性研究方法和研究设计伦理。研究结果将感兴趣的患者，患者家属，医疗保健提供者，研究人员和administrators.This研究调查自闭症研究人员在多大程度上包括自闭症利益相关者群体在他们的研究设计阶段，以及纳入的研究产出的影响。它将有助于自闭症研究的社会学和伦理学文献，价值观和认识论框架的STS研究，以及生物伦理学。PI将采用顺序混合方法研究设计，包括对从事基础生物医学研究，流行病学和服务研究的美国自闭症研究人员进行调查，以确定利用社区参与方法的研究人员，从CBPR（基于社区的咨询研究）到咨询委员会，以及那些对社区参与不感兴趣的研究人员。根据调查结果，研究人员将被分为两组，一组报告在研究中使用了任何社区参与方法，另一组则没有。调查之后将进行结构化访谈，以评估态度和信念（例如，残疾的社会与医学模型或整个生命周期对自闭症的取向，而不是儿童期的焦点）。最后，将对受访研究人员的出版物进行文本分析，以评估研究人员在研究设计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。

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.