Person-Oriented Ethics in Autism Research: Recommendations for Researchers Developed in Collaboration with Participants, Families, and Other Stakeholders

Background:

Ethics is an important consideration in any research project, whether involving human subjects, biorepositories, big data, animal models, and so on. Research ethics is not limited to regulatory considerations, paperwork, and consent forms. It also addresses every day considerations such as respecting participants, considering broader social contexts, and attending to relationships between different people involved in conducting, participating in, and applying research.

Objectives:

The goal of this project is to collaborate with stakeholders to develop recommendations for research ethics regarding participants on the autism spectrum.

Methods:

A scoping literature review was conducted to develop the model of person-oriented research ethics. A systematic-interpretive literature review method was followed in order to identify research ethics issues in autism research. Task force deliberation was used to develop best practices in collaboration with autistic self-advocates, parents, professionals, researchers, and advocacy organization representatives. The work of the task force was advised by broader community engagement through a project website and ongoing conversation with community members.

Results:

The task force has produced a report containing suggestions according to the five guideposts of person-oriented research ethics: respect for holistic personhood, acknowledgment of lived world, individualization, focus on researcher-participant relationships, and empowerment in decision-making. Both conceptual and concrete recommendations are included. Conceptual recommendations include considering the difficulties participants and families may be facing in accessing care, being aware of autism and autistic communities and social groups who have a stake in research, and being mindful of stigma when writing up results. Concrete recommendations include, among others, strategies for creating more accessible documentation and practices such as using more visual communication strategies alongside text and verbal strategies; strategies for reducing anxiety by providing preparatory materials such as Social Stories or letting participants familiarize themselves with the experiment room in advance; and strategies for recognizing the contributions of autistic people as participants and otherwise, such as citing autistic authors.

Conclusions:

Research ethics is important to both researchers and participants as well as broader communities of scientists, families, and people on the spectrum who are all stakeholders in ethics issues. Ethics concerns are fruitfully addressed through engagement with stakeholders. This project has used the strength of this approach to develop best practices for researchers. Future research will implement and evaluate these suggestions in the course of ongoing research projects.