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Cited by 28Ethics in Clinical ResearchEthics and bioethics in healthcareMedical and Health Sciences Research

Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies

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Virani, Alice Hawkins, Longstaff, Holly·2015·Journal of Genetic Counseling
DOI 10.1007/s10897-014-9781-9
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Abstract

Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross‐border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature ‐informed consent and return of individual research results or incidental findings ‐ and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics.

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  • Some scholars proposed more lenient forms of informed consent, such as broad consent and blanket consent, to facilitate practical implementation; however, the moral rationality for these informed consents remains controversial.

    “Some scholars proposed more lenient forms of informed consent, such as broad consent and blanket consent, to facilitate practical implementation [88, 89]. However, the moral rationality for these informed consents remains controversial.”

    From Ethics and governance of trustworthy medical artificial intelligence (2023) · cites this paper as [88]

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  1. 15733599, 2015, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1007/s10897-014-9781-9, Wiley Online Library on [17/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License from http://www.broadinstitute.org/news/globalalliance. Accessed 12 Nov 2013.

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Authors
Virani, A. H., & Longstaff, H.
Affiliations
  • University of British Columbia (CA)
  • Simon Fraser University (CA)
Corresponding author
Virani, Alice Hawkins
ORCID
Venue
Journal of Genetic Counseling
Publisher
Wiley
Published
2014-10-29
Volume
24
Issue
3
Pages
428-432
ISSN
  • 1059-7700 (ISSN-L)
  • 1573-3599
DOI
10.1007/s10897-014-9781-9
OpenAlex
W2038481714
Cited by
28
References
40
Citations by year
2026: 1 · 2025: 1 · 2024: 1 · 2023: 3 · 2021: 6 · 2018: 2 · 2017: 5 · 2016: 4 · 2015: 4
FWCI
4.31
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of Genetic Counseling (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Medical and Health Sciences Research
Keywords
biobanks, informed consent, public health ethics, genetic counseling, benefit sharing, data sharing
MeSH terms
Confidentiality, Genetic Counseling, Humans, Informed Consent, Public Health, Biological Specimen Banks

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