Publication Announcement - Ethics & Human Research
Today we are pleased to announce another article in our series on autism and person-oriented research ethics, published in the journal Ethics & Human Research. This article focuses on the guideposts of “Respect for Holistic Personhood” and “Individualization.” Please see the article information below. You can access the article here.
This has been a great endeavor. Thank you to everyone who has engaged with this project so far. We remain open to feedback and to hearing the ways this work can be useful to your own. Please keep in touch!
TITLE: Person-Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum
AUTHORS: M. Ariel Cascio, Jonathan A. Weiss, and Eric Racine
ABSTRACT Research ethics scholarship often attends to vulnerability. People with autism may be vulnerable in research but are also vulnerable to unjust exclusion from participation. Addressing the needs of participants with autism can facilitate inclusion and honor the bioethics principle of respect for persons while accounting for risk and vulnerability. Drawing from a review of the literature and informed by a moral deliberation process involving a task force of stakeholders (including autistic people and parents of autistic people), we use the model of person-oriented research ethics to identify several practical strategies researchers can use to address these needs and foster inclusion. Strategies include using multiple means of communication, addressing the sensory environment, preparing participants in advance, and accounting for social context. These practical strategies are not just methodological or design choices; they are inherently related to ethical issues. Method and design choices fulfill ethical aspirations by facilitating inclusion, reducing discomfort, and focusing on individuals.
KEYWORDS human subjects research, vulnerable populations, inclusion in research, autism spectrum, research design, person-oriented research ethics