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Keywords:

  • human research ethics;
  • inclusion;
  • institutional review boards;
  • intellectual disabilities;
  • research participation

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 peer-reviewed 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.