Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research [BOOK CHAPTER]

Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research [BOOK CHAPTER]
Britteny Howell, Karrie Shogren
Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation, 5 September 2019; Chapter 3
Excerpt
Approximately 1–3% of the world’s population experiences an intellectual disability (ID)… Despite social and medical gains over the past several decades, people with ID are significantly more likely to experience poorer health and quality of life outcomes than people without… Research participation can play an important role in reducing such persistent disparities; however, people with ID remain under-represented in research for a variety of reasons, including the assumption that they are unable to provide informed consent for participation…