What Is Right? Ethics in Intellectual Disabilities Research

Abstract

There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The authors systematically researched the peerreviewed literature on ethical practices in research with adults with intellectual disabilities to identify and analyze conceptually and empirically supported ethical approaches to research in the area of research with adults with intellectual disabilities. They conducted a thematic analysis of the 37 articles that met inclusion criteria. They identified three overarching themes: (1) guiding frameworks and approaches; (2) strategies to promote accountability to ethics; and (3) making decisions about participation, including considerations for coercion, capacity to consent, surrogate decision-making, and promoting understanding. From the review, they noted diverse recommendations for ethical research practices, characterized by a lack of consensus, entrenched tensions in value orientations, and gaps in knowledge and practice. Attention to promising strands of scholarship that emphasize attention to strengths, autonomy, dignity of risk, and a contextually based framing of consent capacity may be particularly fruitful. Similarly, bringing to the forefront the role of accommodations in promoting participation, systematically studying diverse ethical aspects of research, and identifying and considering the perspectives of persons with intellectual disabilities may represent critical next steps. They suggest that research collaborations between academics and persons with intellectual disabilities present opportunities to further strengthen the ethical integrity of research in the field. A video abstract of this article can be viewed at http://youtu.be/5Oqx02Aw3xs.

Applying the Mental Capacity Act to research with people with learning disabilities

“…There is strong support for ensuring that research about people with learning disabilities should, as a minimum, seek to capture their views (Boxall & Ralph 2011;McDonald & Kidney 2012). Where people with learning disabilities are not included in the research about them, it may be viewed as discriminatory (Iacano 2006).…”

“…In a review of ethical practices in research involving people with intellectual disabilities, McDonald & Kidney (2012) categorise one of the key ethical challenges to researchers as making decisions about research participation (2012: 33). Many of the issues that they summarise within that category relate to the MCA's provisions for research.…”

Navigating the maze: ethics approval pathways for intellectual disability research: Table 1

“…While these protections are welcome and necessary, it has been mooted that rigorous application of guidelines of ethical conduct may have a deleterious effect on ID research in Australia 3. One of the common themes identified by a recent review of the ethical aspects of ID research was the importance of participation, notwithstanding an often reduced capacity for autonomous decision making ‘…that neither the presence of a disability nor the absence of capacity should exclude an individual from participation and that the participation of adults with ID in all research should be pursued.’4…”

“We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research

“…Also of note, there are persistent tensions in values and preferences for research practices linked to how they reflect efforts to preserve autonomy or primarily offer protection from harm (McDonald & Kidney, 2012;McDonald et al, 2009). And despite some researchers' recommendations, their ethics committees may insist on contrary research conditions, including practices that researchers believe are needlessly protective and thus do not promote the dignity of individuals with intellectual and developmental disabilities (Dye, Hare, & Hendy, 2007;Lai et al, 2006;Rodgers, 1999).…”