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Pediatric data sharing in genomic research: attitudes and preferences of parents

Matthew D Burstein1, Jill Oliver Robinson, Susan G Hilsenbeck

  • 1Structural and Computation Biology & Molecular Biophysics Graduate Program.

Pediatrics
|March 12, 2014
PubMed

Insights

Parents sharing genomic data for their children are more concerned about future risks and desire more control, unlike adult participants. Both groups share altruistic motivations for research participation.

Area of Science:

  • Genomic research
  • Bioethics
  • Participant privacy

Background:

  • Federally funded genomics studies in the US store data in national databases with public or restricted release.
  • Public data release poses privacy risks and limits withdrawal, particularly for pediatric participants enrolled with parental consent.

Purpose of the Study:

  • To examine genomic research participants' attitudes towards data sharing (DS).
  • To explore differences in DS preferences between parents of pediatric patients and adult patients.

Main Methods:

  • 113 parents of pediatric patients and 196 adult participants from 6 genomics studies were surveyed.
  • Participants were assigned experimental consent forms and interviewed about DS preferences, study understanding, and attitudes.
  • Descriptive analyses and regression models were used to analyze responses.

Main Results:

  • Most parents (73.5%) and adult participants (90.3%) consented to broad public release of genomic data.
  • Parents were more restrictive in DS decisions, driven by a desire for autonomy and control, not understanding or perceived benefits.
  • Parents expressed greater concern than adults about unknown future risks and desired more involvement in DS decisions.

Conclusions:

  • Parents and adult participants exhibit similar altruistic motivations and understanding of genomics studies.
  • Parents' heightened concern for future risks to their child influences their preference for more restrictive data sharing options.
  • The availability of restrictive data sharing options is crucial for accommodating parental preferences.
Abstract

Keywords:
data sharingparentsparticipant perspectivespublic releaserestricted releasetiered consent

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