Login / Signup

Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.

Kiran Pohar ManhasShawn X DoddStacey PageNicole LetourneauCarol E AdairXinjie CuiSuzanne C Tough
Published in: BMC medical informatics and decision making (2018)
These finding reflect the parenting population's preference for less project-specific permission when research data is non-biological and de-identified and when governance practices are highly detailed and rigourous. Parents recognize that children should become involved in consent for secondary data use, but there is variability regarding when and how involvement occurs. These findings emphasize governance processes and participant notification rather than project-specific consent for secondary use of de-identified, non-biological data. Ultimately, parents prefer general consent processes for sharing de-identified, non-biological research data with ultimate involvement of the child.
Keyphrases
  • electronic health record
  • big data
  • healthcare
  • primary care
  • mental health
  • young adults
  • social media
  • machine learning
  • public health
  • data analysis
  • artificial intelligence