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

自闭症社区的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内出现的关于自闭症研究实践的伦理问题。研究团队将通过与自闭症患者合作来实现这一目标。该团队还将咨询照顾者和自闭症研究人员。研究小组将解决的问题之一是，目前的伦理框架是否有效地反映了自闭症社区的关切。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人的研究提供信息。该项目旨在为自闭症研究人员提供有关如何开展尊重自闭症社区成员的研究的信息和培训。为此，研究小组将：(1)领导焦点小组，旨在确定神经多样性倡导者的伦理关切；(2)为自闭症研究人员创建伦理培训；以及(3)评估培训在培养伦理态度方面的有效性，因为它与开展自闭症研究有关。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类型的自闭症研究的风险和好处的看法。该团队将使用参与者的回应来确定伦理关切如何在现有的或新的伦理和正义框架内保持一致。这些回应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。该团队将把培训分配给四个群体：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、行为和经济科学局通过ER2计划提供资金。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势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.