Opportunities to Advance Equity Through Informed Consent Discussions

Opportunities to Advance Equity Through Informed Consent Discussions
Invited Commentary
Puja J. Umaretiya, Emily E. Johnston
JAMA Network Open, 11 December 2023; 6(12)
Excerpt
As pediatric oncologists, we often ask parents to do the unthinkable: grapple with a child’s new cancer diagnosis and participate in a clinical trial informed consent discussion within hours to days of each other. Informed consent is essential to our practice because access to clinical trials is the standard of care in pediatric oncology. These discussions are both emotionally charged and medically complex, adding challenges to effective communication. Nearly 2 decades ago, Kodish and colleagues first examined this process in a cohort of parents consenting to therapeutic trials for children with newly diagnosed acute leukemia and found that only one-third of parents understood the concept of randomization and that non–English-speaking families were less likely than English-speaking families to understand key aspects of informed consent. Since then, our trials and informed consent discussions have become more complex. Aristizabal et al found that these gaps in our informed consent process persist, particularly for historically marginalized groups exposed to adverse social determinants of health…

Editor’s Note: The text of the commentary does not reference assent or the involvement of pediatric patient in consent processes.