Stewardship Practices of U.S. Biobanks

Overview

Journal Sci Transl Med

Specialties General Medicine
Science

Date 2013 Dec 17

PMID 24337477

Citations 21

Authors

Gail E Henderson

Teresa P Edwards

R Jean Cadigan

Arlene M Davis

Catherine Zimmer

Ian Conlon

Bryan J Weiner

Affiliations

Soon will be listed here.

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.

Citing Articles

Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking.

Cadigan R, Ponsaran R, Rich C, Timmons J, Brothers K, Goldenberg A AJOB Empir Bioeth. 2024; 16(1):42-51.

PMID: 39250773 PMC: 11785498. DOI: 10.1080/23294515.2024.2399533.

Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.

McCormick J, Hopkins M, Lehman E, Green M AJOB Empir Bioeth. 2022; 13(2):89-106.

PMID: 35271430 PMC: 10038193. DOI: 10.1080/23294515.2022.2040644.

Exploring public concerns for sharing and governance of personal health information: a focus group study.

McCormick J, Hopkins M JAMIA Open. 2021; 4(4):ooab098.

PMID: 34926998 PMC: 8672933. DOI: 10.1093/jamiaopen/ooab098.

Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.

Langhof H, Kahrass H, Illig T, Jahns R, Strech D Eur J Hum Genet. 2018; 26(11):1572-1581.

PMID: 30089824 PMC: 6189200. DOI: 10.1038/s41431-018-0228-x.

Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.

Burke W, Beskow L, Trinidad S, Fullerton S, Brelsford K J Law Med Ethics. 2018; 46(1):79-86.

PMID: 29962827 PMC: 6023399. DOI: 10.1177/1073110518766023.

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