Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.
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The author wishes to thank Professor Michael Burgess at UBC for introducing her to the complexities of biobank research, as well as Ushta Canteenwalla and the two anonymous reviewers for their comments and suggestions on previous versions of this manuscript.
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Hawkins, A.K. Biobanks: Importance, Implications and Opportunities for Genetic Counselors. J Genet Counsel 19, 423–429 (2010). https://doi.org/10.1007/s10897-010-9305-1
- Genetic counseling