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Current Genetic Medicine Reports

, Volume 7, Issue 3, pp 153–161 | Cite as

Biobanks in the Era of Genomic Data

  • Juliann Savatt
  • Cassandra J. Pisieczko
  • Yanfei Zhang
  • Ming Ta Michael Lee
  • W. Andrew Faucett
  • Janet L. WilliamsEmail author
Counseling and Testing (C Reiser and C Walton, Section Editors)
  • 17 Downloads
Part of the following topical collections:
  1. Topical Collection on Counseling and Testing

Abstract

Purpose of Review

Biobank research brings together participants, their samples and data, and researchers to provide a productive and efficient resource that advances discovery, prevention, diagnosis, and treatment. This mini-review addresses the importance of governance issues regarding consent, privacy and confidentiality, data sharing, and return of results in biobanks that utilize genomic sequencing data.

Recent Findings

With the availability of genomic sequencing data, there is renewed attention to the value of biobank research. Governance components of consent, data sharing, privacy protections, and disclosure of research results vary widely among biobanks currently established. There is no consensus standard of best practice for managing genomic data regardless of the biobank infrastructure.

Summary

Understanding the various biobank research program components will aid genetics providers and other healthcare providers as they interact with biobank researchers and participants. Governance structures for biobanks will need to be informed by the engagement of participants, researchers, and regulatory agencies. Education concerning the importance of biobank research, transparency of governance structure, and the relationship of genomic data to the improvement of individual health is critical to support continued biobank research.

Keywords

Biobank governance Genomic data sharing Genomic privacy Biobank consent Return of research results 

Notes

Compliance with Ethical Standards

Conflict of Interest

Andrew Faucett reports personal fees as a consultant for The University of Pennsylvania and a grant from Regeneron, outside of submitted work.

Juliann Savatt, Cassandra J. Pisieczko, Yanfei Zhang, Ming Ta Michael Lee, and Janet L. Williams each declare no potential conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Juliann Savatt
    • 1
  • Cassandra J. Pisieczko
    • 2
  • Yanfei Zhang
    • 2
  • Ming Ta Michael Lee
    • 2
  • W. Andrew Faucett
    • 2
  • Janet L. Williams
    • 2
    Email author
  1. 1.Autism and Developmental Medicine Institute, GeisingerLewisburgUSA
  2. 2.Genomic Medicine Institute, GeisingerDanvilleUSA

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