Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

Abstract

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

“…We developed the Project ETHICS cross-sectional survey using a multi-prong approach 14,15 : focus groups, 9,11 prior research, 16–21 an Expert Panel comprised of representatives of each of the 5 participant groups (none of whom were survey respondents), and cognitive interviews. The parent survey had sections on benefits, harms, and safeguards in research with adults with intellectual disability 22–24 though we focus here on the following:…”

“…To participate, individuals had to be 18 years or older, reside or work in the United States, and have the communication skills to make a participation decision and express opinions with or without accommodations (thereby yielding a sample reflective of those who likely could participate in the research under study: self-report research). We created national sampling frames using internet searches for community members, research published or presented for intellectual disability researchers, and a Freedom of Information Act request for IRB Chairpersons (see McDonald and colleagues, 24 for additional information). We recruited via postal mail letters and flyers, electronic mail, social media, and in-person, using a slightly different approach for each group.…”

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

“…Using two parallel forms of the survey (one for adults with intellectual disability, one for all other groups), we asked adults with intellectual disability to respond from their perspective, and others to respond in reference to adults with intellectual disability. The survey also included questions on harms (McDonald, Conroy, Olick, & Panel, 2017) and safeguards (McDonald et al, 2016) in research, though we focus in this manuscript on the following data:…”

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

“…Recommendations exist for translating instruments to other languages, 11 culturally adapting instruments, 12 or adapting materials for use with people with intellectual disability. 13 However, the literature provides little guidance on how to adapt instruments to be accessible to autistic adults, what the adaptation process should entail, or what main issues need to be considered when adapting measures for this population. Thirteen years ago, when we started collecting survey data from autistic participants, we created adaptation processes based on the first author's experience conducting participatory research with other populations.…”