What's the Harm? Harms in Research With Adults With Intellectual Disability

Abstract

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

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

“…Interestingly, disability service providers appear to have slightly better predictions than other stakeholders. It is possible that through long-term relationships supporting adults with intellectual disability, service providers have a strong understanding of their interests and values; they may also be particularly trusted by adults with intellectual disability (McDonald et al, 2017). Researchers may want to build on these informed, trusting relationships to further foster research participation among 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:…”

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:…”

Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

“…There are particular concerns that must be addressed when designing and conducting research with vulnerable people (McDonald, Conroy, & Olick, 2017;Thomson, Roberts, & Bittles, 2014). For this study, the capacity of potential participants to express understanding, freely give consent, and coherently communicate if or when they wish to withdraw their participation were key ethical concerns (Hamilton et al, 2017;McDonald et al, 2017). Physical capability also needed to be gauged, including the ability to perform required tasks such as appropriately responding to interview questions via a communication device.…”