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"Forward-Thinking" in U.S. Biobanking.

R Jean Cadigan1, Teresa P Edwards2, Dragana Lassiter3

  • 11 Department of Social Medicine, CB 7240, University of North Carolina at Chapel Hill , Chapel Hill, North Carolina.

Genetic Testing and Molecular Biomarkers
|January 25, 2017
PubMed
Summary
This summary is machine-generated.

Biobanks often have policies for returning results and specimen ownership, and separate plans for business and specimen disposition. These forward-thinking practices, crucial for biobanking sustainability and ethics, tend to occur in related pairs.

Keywords:
biobanksbusiness planownershippolicyreturn of resultstermination plan

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Area of Science:

  • Biobanking operations
  • Biomedical research infrastructure
  • Public health policy

Background:

  • Biobanks face ethical and operational challenges requiring proactive planning.
  • Assessing biobank preparedness is crucial for long-term research integrity.
  • Existing literature highlights the need for policies on data sharing and specimen management.

Purpose of the Study:

  • To determine if U.S. biobanks implement forward-thinking policies and plans.
  • To investigate the correlation between different types of preparedness indicators.
  • To understand biobank responsiveness to potential challenges.

Main Methods:

  • Survey data from 456 U.S. biobanks were analyzed.
  • Response frequencies for policies (return of results, specimen ownership) and plans (business, specimen disposition) were calculated.
  • Chi-square tests assessed statistical significance of relationships between indicators.

Main Results:

  • 62% of biobanks have a policy for returning individual research results; 70% have a specimen/technology ownership policy. These policies are significantly related (p < 0.001).
  • 34% have a formal business plan; 26% have a plan for specimen disposition upon closure. These plans are significantly related (p < 0.001).
  • Only 7% of biobanks demonstrated forward-thinking across all four indicators; 12% demonstrated none.

Conclusions:

  • Biobank policies on results return and ownership tend to be implemented together.
  • Biobank plans for business and specimen disposition also tend to occur together.
  • Policies address ethical/legal concerns, while plans indicate sustainability, reflecting distinct aspects of biobank preparedness.