Recruiting People With Disabilities as Research Participants: Challenges and Strategies to Address Them

How the Powerful Decide: Access to Research Participation by those at the Margins

“…Without fully understanding the research, adults with intellectual disabilities may not be positioned to make an informed decision about participation. When those in power, such as researchers and IRB members, render judgment about this groups' ability to make an informed, voluntary decision, their conclusions may be driven more by nebulous criteria (including inflated concerns) that lack an empirical basis rather than fact, thereby potentially needlessly restricting their self-determination (Becker et al 2004;Clegg 2000;Dye et al 2004;Ellis 1992;Fisher 2003;Lindsey 1994Lindsey , 1996. Moreover, these decisions may overlook how well-constructed environments can mitigate these concerns by facilitating comprehension and minimizing coercion (Clegg 2000;Fisher 2003).…”

“…As the potential for harm rises, investigators and regulators are advised to implement parallel increases in protections to mitigate the harm. Substantial tension persists regarding under what circumstances and in what form such safeguards should be implemented (Becker et al 2004;Dalton and McVilly 2004;Ellis 1992;Freedman 2001;Hammel 2003;Haywood 1977;Justo 2004;Kellett and Nind 2001;Kim et al 2001;Muncie et al 1997;NIH 1999;Sachs et al 1994;Warren et al 1986). Harm may be an important environmental consideration in understanding marginalized groups' access to community participation.…”

“…It is here that we may see a divide between IRB members who seek to protect participants and ID researchers who want to conduct the studies. For example, some researchers feel that IRB members overstate risks in social science research and insist upon protections that may threaten their ability to conduct research and/or may be insensitive to the context of a particular study that lessens potential harm (Becker et al 2004;Oakes 2002). While some previous and current IRB members agree with this perspective, others emphasize the need for independent review and the empirical assessment of risk (Beh 2002;Fendrich 2004;IRB Advisor 2006;Labott and Johnson 2004).…”

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

“…Others recommend that research aims be informed by the social model of disability (Gilbert, 2004;Rodgers, 1999) and investigate research questions that promote dignity and humanity (Clegg, 2004;Diesfeld, 1999). Scholars also advise avoiding perpetuating negative stereotypes about people with intellectual and developmental disabilities (Becker, Roberts, Morrison, & Silver, 2004) and focusing instead on their opinions and experiences (Brigham, 1998;Ellem, Wilson, Hong Chui, & Knox, 2008;Rodgers, 1999). Others add that researchers should be honest about the research (Brigham, 1998), use participatory and visual methods (Boxall & Ralph, 2009), and provide supports to participants (Brodin & Renblad, 2000;Dalton & McVilly, 2004).…”

“…Similarly, collaborations with people with intellectual and developmental disabilities may help researchers design research that conveys an attitude of collaboration and that shares research more fully with them. Resulting research practices might include providing protections against violations of confidentiality, paying participants for their contribution, inviting opportunity for feedback on findings, and sharing findings more readily outside the scientific community (Becker et al, 2004;Brigham, 1998;Dalton & McVilly, 2004;Diesfeld, 1999;Freedman, 2001;Gilbert, 2004;Iacono, 2006;McCarthy, 1998;Rodgers, 1999;Rolph, 1998;Stalker, 1998). Some note that while such relationships may promote ethical research, they may also demand critical relational skills of researchers (Becker et al, 2004;Cameron & Murphy, 2006).…”