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Practical barriers and ethical challenges in genetic data sharing.

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Researchers found challenges accessing genetic data from dbGaP (Database of Genotypes and Phenotypes), citing application difficulties and consent issues. Recommendations include longer publication embargoes and flexible data-sharing models for genetic epidemiology studies.

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Area of Science:

  • Genetics
  • Bioinformatics
  • Epidemiology

Background:

  • The Database of Genotypes and Phenotypes (dbGaP) mandates data deposition for advancing scientific research.
  • Policies require genome-wide association study and next-generation sequencing data in dbGaP.
  • Concerns exist regarding data access, subject identifiability, consent, and embargo enforcement.

Purpose of the Study:

  • To investigate researchers' experiences with the dbGaP data access and deposition process.
  • To identify logistical and ethical challenges faced by genetic epidemiologists using dbGaP.
  • To gather recommendations for improving the dbGaP data-sharing system.

Main Methods:

  • A survey was distributed to members of the International Genetic Epidemiology Society (IGES).
  • 175 IGES members completed the survey, yielding a 27% response rate.
  • Survey responses analyzed experiences with data application, receipt, and deposition.

Main Results:

  • Only 32% of respondents who received dbGaP data found the application process easy, though 75% received data within five months.
  • Challenges included identifying signing officials and lengthy application procedures.
  • 31% faced IRB restrictions, and 15% needed to reconsent participants for data deposition.
  • 56% of respondents felt the publication embargo period was insufficient.

Conclusions:

  • The current dbGaP system presents significant logistical and ethical hurdles for researchers.
  • Recommendations include extending publication embargo periods and adopting diverse data-sharing models.
  • Improving dbGaP accessibility and flexibility is crucial for facilitating scientific advancement in genetic epidemiology.