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. 2013 Dec 11;5(215):215cm7.
doi: 10.1126/scitranslmed.3007362.

Stewardship practices of U.S. biobanks

Gail E Henderson  1 , Teresa P Edwards, R Jean Cadigan, Arlene M Davis, Catherine Zimmer, Ian Conlon, Bryan J Weiner
Affiliations

Stewardship practices of U.S. biobanks

Gail E Henderson et al. Sci Transl Med. .

Abstract

Biobanks require new governance models that address their ethical and regulatory challenges. One model relies on stewardship of specimens throughout their life course. Here, we discuss findings from our survey of 456 U.S. biobank managers that addressed whether and how biobanks steward their specimens. The findings reveal that most biobanks do not create ongoing relationships with contributors but do practice stewardship over storing and sharing of specimens. Biobanks now need guidance to fully articulate stewardship practices that ensure respect for contributors while facilitating research.

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Figures

Fig. 1
Fig. 1. Practices for contributors
(A) Questions and skip patterns used to determine whether and how contributors are informed that their specimens will be stored for future research. (B) Questions and skip patterns regarding return of results to contributors.
Fig. 2
Fig. 2. Biobank reach-through
Questions and skip patterns regarding disposition of remaining specimens.
See this image and copyright information in PMC

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