Central Michigan University, USA.
Institut de recherches cliniques de Montréal, Canada.
Autism. 2020 Oct;24(7):1676-1690. doi: 10.1177/1362361320918763. Epub 2020 Jun 18.
Research ethics means issues that concern the welfare and wellbeing of people who take part in research. It is important in all scientific studies. Ethics helps people who do research treat people who take part in research fairly and with respect. This article is about day-to-day ethics when autistic people take part in research. We present tips for researchers who want to do this type of study.We used two methods to create these tips. First, we wanted to know what other people said about this topic. We used a literature review to find out. Second, we wanted to know what autistic people, parents, and professionals thought, and had a working group meet to discuss it. The working group provided advice that researchers could consider around day-to-day ethics in research. This article talks about these methods and advice. The advice fits into five big groups:Tailor the research process for the unique needs of each person.Think about the world in which people who take part in research live.Make it easier for people to make their own choices.Value what people who take part in research have to share and consider their needs and strengths.Think about how researchers and people who take part in research work together.This project shows why it is useful for researchers and communities to talk about research ethics together.
研究伦理是指涉及参与研究的人的福利和福祉的问题。它在所有科学研究中都很重要。伦理有助于从事研究的人公平、尊重地对待参与研究的人。本文讨论的是自闭症患者参与研究时的日常伦理问题。我们为希望进行此类研究的研究人员提供了一些建议。我们使用了两种方法来制定这些建议。首先，我们想了解其他人对此主题的看法。我们使用文献综述来找出答案。其次，我们想了解自闭症患者、家长和专业人士的想法，并召开工作组会议进行讨论。工作组提供了研究人员在研究日常伦理方面可以考虑的建议。本文介绍了这些方法和建议。这些建议可分为五大类：根据每个人的独特需求调整研究过程。考虑参与者所处的世界。使人们更容易做出自己的选择。重视参与者分享的内容，并考虑他们的需求和优势。考虑研究人员和参与者如何共同工作。该项目展示了为什么研究人员和社区一起讨论研究伦理是很有用的。
