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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 Holm
Published 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.
Keyphrases
  • health information
  • big data
  • mental health
  • social media
  • electronic health record
  • cross sectional
  • health insurance
  • healthcare
  • machine learning