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(p. 7) Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research 

(p. 7) Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research
Chapter:
(p. 7) Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research
Author(s):

Pamela G. Nathanson

, Theodore E. Schall

, and Chris Feudtner

DOI:
10.1093/med-psych/9780190647254.003.0002
Page of

date: 20 January 2019

This chapter lays out the ethical challenges and proactive strategies involved in balancing the rights of adolescents and young adults (AYAs) with intellectual disability (ID) to participate in clinical research with the obligation to protect a potentially vulnerable population from research harms. The chapter presents an illustrative case study involving a young adult research participant with Down syndrome whose capacity and legal authority to consent to participate in a study was questioned after an exchange with a staff member aroused suspicion about potential misconduct. Techniques to enhance participation, especially in the consent or assent processes, of AYAs with ID in research are outlined. Both individual-level and structural-level protections to ensure ongoing voluntary participation, relevant for both study teams and institutional review boards, are recommended.

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