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Parent attitudes towards data sharing in developmental science.

Jannath Begum Ali1, Rebecca Holman1, Amy L Goodwin2

  • 1Department of Psychological Sciences, Birkbeck University of London, London, England, UK.

Open Research Europe
|July 15, 2024
PubMed
Summary
This summary is machine-generated.

Parents support curated data sharing in developmental science, not open access. They prefer dynamic consent models and emphasize privacy, security, and research purpose. Trust-building and advanced analytics are crucial for effective data sharing.

Keywords:
Autism spectrum disorderOpen scienceconsentdata sharingdevelopmental scienceneurodevelopmental conditionstypical development

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Area of Science:

  • Developmental Science
  • Data Science
  • Research Ethics

Background:

  • Data sharing is encouraged in developmental science, with mandates for open access.
  • Benefits include accelerated discovery and democratized research access.
  • Privacy, security, and ethical concerns, especially for child participants, are significant.

Purpose of the Study:

  • To survey parental opinions on data sharing in developmental science.
  • To understand willingness to share child data, with whom, and under what consent models.

Main Methods:

  • A comprehensive survey of 195 parents.
  • Investigated willingness to share data, data recipients, and consent preferences.

Main Results:

  • Parents favor curated over open data sharing.
  • Privacy, security, and altruistic research purposes are key considerations.
  • Nuanced, dynamic consent models, allowing preference changes, are strongly preferred.

Conclusions:

  • Developmental science should adopt curated sharing with dynamic consent.
  • Enhanced communication and outreach are needed to build trust.
  • Advanced analytics are required to assess the impact of selective sharing on research datasets.