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

Abstract

How do those in power decide to include and exclude those at the margins from community life? We used simulated review of research vignettes to examine how researchers and members of Institutional Review Boards make decisions concerning the research participation of adults with and without intellectual disabilities. Results indicate that decision-makers are influenced by the disability status of the sample, characteristics of the research in which they are engaged, and their attitudes toward the research participation of adults with intellectual disabilities as well as their own relationship to the research process. For example, decision-makers may create situations that limit the self-determination of adults with intellectual disabilities and adults without disabilities within the research context, particularly when the research poses some risk of harm to participants. Implications for theory, action and research are explored.

Where are persons with intellectual disabilities in medical research? A survey of published clinical trials

“…These assumptions may cause research ethics boards to be extraordinarily cautious leading researchers to shy away from including persons with ID in their studies. Thus, the pendulum may have swung too far whereby persons with ID have been unjustly excluded from research (Lai et al 2006;McDonald & Keys 2008;Guttmacher 2011) with little thought given to ways to safely include them (Feldman et al 2012a). These decision-making biases contradict the three principles of respect, beneficence and distributive justice.…”

“…Thus, the pendulum may have swung too far whereby persons with ID have been unjustly excluded from research (Lai et al . ; McDonald & Keys ; Guttmacher ) with little thought given to ways to safely include them (Feldman et al . 2012a).…”

Participant experience of invasive research in adults with intellectual disability

“…Research in ID poses a number of barriers ranging from additional time requirements (and therefore funding constraints) to concerns surrounding capacity to consent 1–7. In addition, ethics committees often take a conservative approach in necessary attempts to shield potential ID participants from exploitation 8 9. This conservatism is likely to be the result of a history of ethical malpractice in ID research 10–13.…”

Ethics in Pharmacologic Research in the Child with a Disability

“…In recent years, however, the pendulum has begun to swing the other way [8,[23][24][25]. Disability rights activists have argued that exclusion from research has led to sub-standard treatment for children with disabilities and unequal access to the benefits of research [23,26,27]. Access and inclusion, as opposed to protection, are becoming dominant themes.…”