Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.
Armand H Matheny AntommariaKyle Bertram BrothersJohn A MyersYana B FeyginSharon A AufoxMurray H BrilliantPat ConwayStephanie Malia FullertonNanibaa' A GarrisonCarol R HorowitzDavid L VeenstraRongling LiEvette J LudmanCatherine A McCartyJennifer B McCormickNathaniel D MercaldoMelanie F MyersSaskia C SandersonMartha J ShrubsoleJonathan S SchildcroutJanet L WilliamsMaureen E SmithEllen Wright ClaytonIngrid A HolmPublished in: AJOB empirical bioethics (2018)
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.