TY - JOUR
T1 - Person-Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum
AU - Cascio, M. Ariel
AU - Weiss, Jonathan A.
AU - Racine, Eric
N1 - Funding Information:
This project was funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (with Racine as the coprincipal investigator). Cascio was additionally funded by the Angelo‐Pizzagalli Scholarship of the IRCM Foundation and the Social Sciences and Humanities Research Council of Canada's Banting Postdoctoral Fellowship. Racine was additionally funded by a Fonds de recherche du Québec—Santé senior scholar career award.
Publisher Copyright:
© 2020 by The Hastings Center. All rights reserved
PY - 2020/9/1
Y1 - 2020/9/1
N2 - 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.
AB - 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.
KW - autism spectrum
KW - human subjects research
KW - inclusion in research
KW - person-oriented research ethics
KW - research design
KW - vulnerable populations
UR - http://www.scopus.com/inward/record.url?scp=85091127486&partnerID=8YFLogxK
U2 - 10.1002/eahr.500064
DO - 10.1002/eahr.500064
M3 - Article
C2 - 32937033
AN - SCOPUS:85091127486
SN - 2578-2363
VL - 42
SP - 2
EP - 16
JO - Ethics and Human Research
JF - Ethics and Human Research
IS - 5
ER -