AJOB empirical bioethics
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AJOB empirical bioethics · Jul 2018
Randomized Controlled Trial Multicenter StudyParents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.
The factors influencing parents' willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents' willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. ⋯ Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.