"There is No Black or White": Scientific Community Views on Ethics in Intellectual and Developmental Disability Research

From an ethical standpoint, there are questions about the best ways to include adults with intellectual and developmental disabilities in research. Scholarship reflects divergent responses to these enduring questions and values that can be at odds with one another. To deepen our understanding of beliefs in the scientific community about how to conduct ethically strong research with adults with intellectual and developmental disabilities, we examined the views of researchers who conduct this research and ethics review board members on ethical principles and practices. We conducted four focus groups with 17 researchers and ethics review board members. We asked participants to discuss how to ethically conduct research, relevant factors to consider, appropriate ways to address ethical concerns, and the role of ethical and civil rights principles. Findings indicate support for the use of ethical principles and newer models of disability to promote inclusion in research, a focus on researchers' interpersonal skills and relationships to participants, questions about the best approaches to recruitment, consent, and compensation, and strategies to promote participation in research. These findings reflect the socio-ecological model of disability, civil rights-based interpretations of ethical principles, the provision of accommodations as an ethical imperative, the potential benefits of promoting relationships between researchers and persons with intellectual and developmental disabilities, and the need for dialogue between researchers and ethics review board members.