Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities

Abstract

Research ethics is an important part of any study. Ethics goes beyond ethics committee approval and consent documents. It addresses broader issues of respect, inclusion, and empowerment in the everyday context of research. This article focuses on everyday aspects of research ethics for studies involving autistic participants. It draws on a review of the literature and a process of ethical deliberation involving a task force of researchers, professionals, autistic self-advocates, and parents. These methods led to the creation of suggestions for researchers. This article describes the community engagement process, briefly presents the task force suggestions, and provides more detailed discussion of select items for illustration. Suggestions are organized around five “person-oriented research ethics” guideposts: (1) individualization (e.g. providing individualized support for participants), (2) acknowledgment of lived world (e.g. acknowledging barriers to care that impact research ethics), (3) empowerment in decision-making (e.g. creating accessible consent processes that address specific communication needs), (4) respect for holistic personhood (e.g. addressing sensory and processing needs and strengths), and (5) focus on researcher–participant relationships (e.g. involving autistic people in ways other than research participants, including but not limited to via participatory research). This project highlights the value of researcher–community partnerships in discussions about research ethics. Lay abstract 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.