Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust.

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.

No abstract

The values of the disability rights movement and community psychology promote research that focuses on improving the lives of individuals with disabilities (Dowrick & Keys, 2001). Using the Internet for social interactions has been shown to contribute to an individual's identity development, sense of community, and well-being (Obst, Zinkiewicz, & Smith, 2002a; Turkle, 1995). While challenges in typical social interactions have traditionally been considered a defining feature of autism spectrum disorder, autistic individuals have taken advantage of the Internet to develop social interactions (Blume, 1997a). The present study focused on the online Autistic community and how the importance and value of involvement in it is related to Autistic identity, sense of community, and psychological well-being. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) partnered with the Gernsbacher Lab to form the Gateway Project. Using the Gateway Project, AASPIRE conducted the Internet Use, Community, and Well-Being Study and collected data from 72 autistic adults online. It was hypothesized that the importance and value of involvement in the online Autistic community would be positively related to Autistic identity and sense of community, Autistic identity and sense of community would be positively related, and Autistic identity and sense of community would be positively related to psychological well-being. It was also hypothesized that the positive relationship between the importance and value of involvement in the online Autistic community and psychological well-being would be mediated by Autistic identity and sense of community.

Social and cognitive characteristics of adults with intellectual disabilities (ID) place them at risk for inappropriate inclusion in or exclusion from research participation. As we grapple with how to include adults with ID in research in order to secure their right to contribute to scientific advancements and be positioned to derive benefit from ensuing knowledge, it is critical to consider scientific gatekeepers' perspectives on risks of and protections for including adults with ID in research. We surveyed 199 Institutional Review Board members and intellectual disability researchers in the United States to identify their perceptions of specific risks and necessary protections in (hypothetical) research studies. The research studies varied as to whether they included adults with ID in the research sample and the level of harm to which research participants were exposed. Results suggest that identification of psychological, social, and legal risks and necessary protections varied by the disability status of the sample, the level of risk, and the role of the person reviewing the study. For example, participants identified more psychological, information control, legal, and social risks in higher harm research studies. Participants reported a need for more protections in high-harm studies as well as studies that included adults with ID. In some instances the nature of identified risks and protections and respondents' characterization of these risks and necessary protections suggested concerns related specifically to adults with ID. Implications for practice, policy, and future research related to access to research participation are discussed.