Neglected Ethical Issues in Biobank Management: Results from a U.S. Study Public Deposited

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Creator
  • Henderson, Gail
    • Affiliation: School of Medicine, Department of Social Medicine, Center for Genomics and Society
  • Lassiter, Dragana
    • Affiliation: College of Arts and Sciences, Department of Anthropology, School of Medicine, Department of Social Medicine, Center for Genomics and Society, Department of Sociology
  • Conlon, Ian
    • Other Affiliation: Research Triangle Institute, Research, Triangle Park, NC, USA
  • Haldeman, Kaaren
    • Affiliation: School of Medicine, Department of Social Medicine
  • Cadigan, R Jean
    • Affiliation: School of Medicine, Department of Social Medicine, Center for Genomics and Society
  • Reavely, Erik
    • Affiliation: School of Medicine, Department of Social Medicine
Abstract
  • Abstract The empirical literature on the ethical, legal, and social implications (ELSI) of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Little attention has been paid to the perspectives and practices of those who operate biobanks. We conducted a study of U.S. biobanks consisting of six in-depth case studies and a large online survey (N = 456), which was developed from the case study results. The case studies included qualitative interviews with a total of 24 personnel. Both interview and survey questions focused on how biobanks operate, and what policies and practices govern their relationships with specimen contributors and the researchers who use the specimens. Analysis revealed unexpected ethical dilemmas embedded in those policies and practices that highlight a need for practical planning. In this paper, we review three issues seldom explored in the ELSI literature: 1. the discrepancy between biobankers’ hope that the bank will exist “permanently” and the fact that funding is limited; 2. the lack of planning for what will happen to the specimens if the bank closes; and 3. the concern that once collected, specimens may be underutilized. These dilemmas are missing from current public representations of biobanks, which instead focus on the intrinsic value in storing specimens as essential to the advancement of translational research. We argue that attention to these issues is important for biobanking, and that greater transparency of these policies and practices will contribute to promoting public trust in biobanks.
Date of publication
Identifier
  • doi:10.1186/2195-7819-9-1
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • R Jean Cadigan et al.; licensee BioMed Central Ltd.
License
Journal title
  • Life Sciences, Society and Policy
Journal volume
  • 9
Journal issue
  • 1
Page start
  • 1
Language
  • English
Is the article or chapter peer-reviewed?
  • Yes
ISSN
  • 2195-7819
Bibliographic citation
  • Life Sciences, Society and Policy. 2013 Mar 27;9(1):1
Access
  • Open Access
Publisher
  • Springer
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