Biobanks and the phantom public
Abstract
This paper surveys the current state of knowledge about the relationship between different national publics and biobanks, how different publics perceive biobanks, and which issues are identified as important by various stakeholders. We discuss existing studies and emerging governance strategies dealing with the biobank-publics interface and argue that the search for phantom (biobank) public(s) is on, but still much needs to be done. We argue that the existing data originate in a relatively few regions, among them Northern Europe, the United Kingdom, and in certain U.S. states and are often based on survey research with small samples and short questionnaires. Combined usage of qualitative and quantitative methodology in studies is still rare though of great importance in order to investigate distributions of public opinion and also to be able to explain these patterns. Many important questions in the relationship between publics and biobanks are unexplored, or the existing data are inconsistent.
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As stated by Gottweis et al., most of the studies yield interesting data, but currently we are confronted with a heterogeneous patchwork of insights rather than a coherent picture of evidence.
“As stated by Gottweis et al. (45), “most of these studies yield interesting data, but currently we are confronted with a heterogeneous patchwork of insights rather than a coherent picture of evidence” (p. 434).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [45]
Robust mixed-methods approaches, combining both quantitative and qualitative techniques, can help to both elucidate and explain patterns of attitudes, opinions, beliefs, and actions.
“Robust mixed-methods approaches, combining both quantitative and qualitative techniques, can help to both elucidate and explain patterns of attitudes, opinions, beliefs, and actions (45).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [45]
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Lessons from HeLa Cells: The Ethics and Policy of Biospecimens
Beskow, L. M. (2016) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022536 · Cited by 146 · see citing works
“…M anuscript A uthor M anuscript Table 2 Summary of review articles on lay attitudes toward biobanking Review Description Main findings Conclusion Gottweis et al. 2011 (45) Narrative review of 23 quantitative and qualitative studies of public perceptions of biobanks, 2003– 2010 (international) ■…”
BackgroundMethodInfluentialInclusion of Residual Tissue in Biobanks: Opt-In or Opt-Out?
Giesbertz, N. A. A., Bredenoord, A. L., & van Delden, J. J. M. (2012) · PLoS Biology · doi:10.1371/journal.pbio.1001373 · Cited by 48 · see citing works
- Authors
- Gottweis, H., Chen, H., & Starkbaum, J.
- Affiliations
- University of Vienna (AT)
- Zhejiang University (CN)
- Corresponding author
- Gottweis, Herbert
- Venue
- Human Genetics
- Published
- 2011-07-20
- Volume
- 130
- Issue
- 3
- Pages
- 433-440
- ISSN
- 0018-7348 (ISSN-L)
- 0340-6717
- 1432-1203
- OpenAlex
- W2082478707
- Cited by
- 43
- References
- 0
- Citations by year
- 2025: 1 · 2023: 1 · 2022: 4 · 2021: 4 · 2020: 5 · 2019: 1 · 2017: 1 · 2016: 5 · 2015: 4 · 2014: 3 · 2013: 4 · 2012: 9
- FWCI
- 5.34
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Human Genetics (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- 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 › Physiology › Biomedical Ethics and Regulation
- Keywords
- biobanks, public perception, biobank governance, public opinion, stakeholder perspectives, research ethics
- MeSH terms
- China, Community-Institutional Relations, Europe, United Kingdom, Humans, Iceland, Health Knowledge, Attitudes, Practice, Public Opinion, Social Justice, Biological Specimen Banks
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