A Participatory Approach to Autism Research, Ethics, and the Neurodiversity Movement

自闭症社区的一部分人认同神经多样性运动，该运动断言自闭症是一种需要支持的差异形式，而不是一种需要治愈的疾病。鉴于这一运动的出现，这个项目的一个关键焦点是更好地理解自闭症社区中出现的关于自闭症研究实践的伦理问题。研究小组将通过与自闭症患者合作来实现这一目标。该小组还将咨询护理人员和自闭症研究人员。研究小组将解决的问题之一是，当前的伦理框架是否有效地捕捉到了自闭症群体的关注。该项目将确定知识差距，并为涉及自闭症社区成员或其他神经多样性个体的研究提供信息。该项目旨在为自闭症研究人员提供信息和培训，让他们了解如何进行尊重自闭症群体成员的研究。为此，研究团队将：(1)开展焦点小组，旨在确定神经多样性倡导者的伦理问题；(2)为自闭症研究人员创建伦理培训；(3)评估培训在培养与开展自闭症研究相关的伦理态度方面的有效性。在线焦点小组将包括自闭症成年人、自闭症儿童的父母和自闭症研究人员。研究参与者将讨论他们对几种自闭症研究的风险和益处的看法。该小组将利用参与者的回答来确定伦理问题如何在现有的或新的伦理和正义框架内协调一致。这些回答将为培训的设计提供信息，以帮助研究人员了解自闭症患者与研究相关的观点，自闭症研究过程中可能出现的伦理问题，以及如何最好地管理这些问题。该团队将把培训分发给四个群体：本科生、研究生、研究人员和机构审查委员会成员。该项目由社会、行为和经济科学理事会通过ER2计划资助。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

Portions of the autism community identify with the neurodiversity movement, which asserts that autism is a form of difference to be supported rather than a disease to be cured. Given the emergence of the movement, a key focus of this project is to better understand ethical concerns emerging within the autism community about autism research practices. The research team will accomplish this goal by partnering with autistic people. The team will also consult with caregivers and autism researchers. Among the questions the research team will address is whether current ethical frameworks effectively capture the concerns of the autism community. The project will identify knowledge gaps and inform research involving members of the autism community or other neurodiverse individuals. This project aims to provide information and training for autism researchers about how to conduct research that is respectful of members of the autism community. To do this, the research team will: (1) conduct focus groups aimed at identifying ethical concerns of neurodiversity advocates, (2) create ethics training for autism researchers, and (3) evaluate the training’s effectiveness at fostering ethical attitudes as it pertains to conducting autism research. Online focus groups will include autistic adults, parents of autistic children, and autism researchers. Research participants will discuss their opinions about the risks and benefits of several types of autism research. The team will use participant responses to determine how ethical concerns align within existing, or new, frameworks of ethics and justice. The responses will inform the design of a training to help researchers learn about the research-related perspectives of autistic people, the ethical concerns that may arise during autism research, and how to best manage these concerns. The team will distribute the training to four groups: undergraduates, graduate students, researchers, and members of institutional review boards.This project is funded through the ER2 program by the Directorate for Social, Behavioral and Economic Sciences.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.