At EDAC we are committed to making research accessible. Our Plain Speaking Summaries include plain language text on published papers and an interview with the authors. In this Plain Speaking Summary, Ellen Maloney and Michelle Sader introduced their paper that was published in 2024 and is interviewed by Emy Nimbley, EDAC researcher. Ellen Maloney (she/they) is a peer researcher at EDAC at the University of Edinburgh, and Michelle Sader is a postdoctoral research fellow at EDAC.
Paper Synopsis
The full paper can be found here.
AIMS:
This perspective piece aims to shed light on the ethical complexities surrounding autism research, focusing on the understandable concerns the Autistic community has regarding MRI techniques and publicly accessible brain imaging data. For instance, only some members of the Autistic community can take part in MRI scans due to overwhelming sensory aspects associated with the process. There are also many ways with which anonymised databases of brain images could potentially be misused, or used to harm the Autistic identity, such as conducting research focusing on “treating” autism. By exploring the in-depth perspectives of Autistic individuals, this manuscript seeks to provide recommendations for researchers and clinicians to improve their practices and conduct autism-affirming research.
KEY FINDINGS:
Existing research has highlighted concerns the Autistic community have regarding the long-term use of their data, as well as how an Autistic experience of an MRI scan significantly differs relative to a non-Autistic experience. Broad concerns have been raised about the ethical implications of research practices, including the potential for data misuse, lack of representation, and medicalisation of autism. Ellen and Michelle recommend several measures to improve MRI research and the use of accessible brain imaging data to make the practice more aligned with the priorities of the Autistic community. Recommendations include reframing research objectives to focus on support rather than treatment, enhancing communication during MRI procedures, and implementing more flexible consent procedures for sharing data.
METHOD:
This research was conducted as part of EDAC's first work stream, which used five workshops to set priorities as to how EDAC could ethically co-produce and co-design research. From these workshops, Autistic collaborators shared their perspectives and insights on certain research approaches, such as magnetic resonance imaging (MRI), or certain expectations from research, such as the practice of publicly sharing anonymised data. Quotes from these workshop were used to highlight and flag the existing concerns held by research culture.
IMPACT:
By adopting these recommended practices, researchers can better respect the autonomy and preferences of Autistic individuals, leading to more inclusive and ethical research outcomes. This will not only aim to currently benefit Autistic individuals by ensuring their voices are heard, but also aim to pave the way for more respectful and supportive research practices in the future.
