We are happy to announce that we have had two papers related to the person-oriented research ethics project published recently. Because these articles were in press at the same time, we’re using one post to announce them both. Please see the information for each article below. Article 1 focuses on the guidepost of “Acknowledgment of Lived World.” Article 2 takes the broadest view of the project: it is co-authored by the Task Force, describes the Task Force process, and shares the key suggestions from the Task Force Report. We also have a third article in press and expected later this fall. We will announce it then.
ARTICLE 1: “Acknowledgment of Lived World”
TITLE: Making Autism Research Inclusive by Attending to Intersectionality: A Review of the Research Ethics Literature
AUTHORS: M. Ariel Cascio, Jonathan A. Weiss, and Eric Racine
JOURNAL: Review Journal of Autism and Developmental Disorders
ABSTRACT: Growth in autism research necessitates corresponding attention to autism research ethics, including ethical and meaningful inclusion of diverse participants. This paper presents the results of a review of research ethics literature, strengthened by consultation with a task force involving autism professionals, family members, and self-advocates on the spectrum. It reviews research ethics concerns around sex and gender; level of support needs; communication modes; race, ethnicity, geography, and language; socioeconomic status; and age. The exclusion of marginalized subgroups of people with autism is a major ethical concern. Researchers can facilitate inclusion by using inclusive terminology, developing accessible communication strategies, or traveling to meet participants. A person-oriented research ethics framework described in this paper structures the advice offered in the literature to create inclusive and supportive research environments.
KEYWORDS: Person-Oriented Research Ethics; Intersectionality; Demographics; Lived Experience; Stereotypes; Inclusion
ARTICLE 2: The Task Force Report, Peer-Review Version
TITLE: Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities
AUTHORS: M. Ariel Cascio, Jonathan A. Weiss, Eric Racine, and the Autism Research Ethics Task Force
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 paper 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 make 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 paper 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.
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 paper 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 paper 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.
KEYWORDS: ethics, research ethics, community engagement, advocacy, informed consent