Minors and incompetent adults: A tale of two populations
The participation of vulnerable populations in biomedical research—such as minors and incompetent adults—has in the past, and will continue to be a central consideration in bioethics considering they warrant special protections against potential rights violations and exposure to undue risk. These populations, however, should not be excluded from the opportunity to benefit from scientific progress through their research participation. The promises of personalized medicine for improved diagnosis and treatment of pediatric diseases further underscores this pressing need for their inclusion. This chapter provides both a retrospective and prospective analysis of research participation, with a special focus on the involvement of minors and incompetent adults in the data-intensive research typical of personalized medicine and genomic translation. The authors propose reverse vulnerability as one conceptual lens through which to examine the ethical intersectionalities associated with data-intensive research participation within both populations. The chapter includes a discussion of how situational vulnerabilities unfold for minors and incompetent adults while participating in data-intensive research, as well as how these vulnerabilities are implicated in future ethics governance in the post genomic era.