Abstract
This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people’s engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level.
Similar content being viewed by others
Log in or create a free account to read this content
Gain free access to this article, as well as selected content from this journal and more on nature.com
or
References
HUGO Ethics Committee: Statement on Human Genomic Databases. Human Genome Organizations. December 2002 http://www.hugo-international.org/img/genomic_2002.pdf.
Knoppers BM : Consent revisited: points to consider. Health Law Rev 2005; 13: 33–38.
Caulfield T, Kaye J : Broad consent in biobanking: reflections on seemingly insurmountable dilemmas. Med Law Int 2009; 10: 85–100.
Gottweis H, Chen H, Starkbaum J : Biobanks and the phantom public. Hum Genet 2011; 130: 433–440.
Lipworth W, Forsyth R, Kerridge I : Tissue donation to biobanks: a review of sociological studies. Sociol Health Illness 2011; 33: 792–811.
Kaufman D, Murphy-Bollinger J, Scott J, Hudson K : Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009; 85: 643–654.
Lemke A, Wolf W, Hebert-Beirne J, Smith M : Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010; 13: 368–377.
Kettis-Lindblad A, Ring L, Viberth E, Hansson MG : Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study. Scand J Public Health 2007; 35: 148–156.
Tupasela A, Sihvo S, Karoliina S, Jallinoja PA, Aro AR, Hemminki E : Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand J Public Health 2010; 38: 45–52.
Hallowell N, Cooke S, Crawford G, Lucassen A, Parker M, Snowdon C : An investigation of patients’ motivations for their participation in genetics-related research. J Med Ethics 2010; 36: 37–45.
Chadwick R, Berg K : Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2001; 2: 318–321.
Knoppers B : Consent to ‘personal’ genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent. Eur Mol Biol Organ 2010; 11: 416–419.
Roche PA, Annas GJ : Protecting genetic privacy. Nat Rev Genet 2001; 2: 392–396.
Hobbes A, Starkbaum J, Gottweis U, Wichmann H, Gottweis H : The privacy-reciprocity connection in biobanking: comparing german with UK strategies. Public Health Genomics, in press.
Nilstun T, Hermerén G : Human tissue samples and ethics. Medicine, Health Care and Philosophy 2006; 9: 81–86.
Snell K, Starkbaum J, Lauss G, Vermeer A, Hélen I : Reassessing privacy in biobanking. The significance of control within the digital information flows. Public Health Genomics, in press.
Knoppers BM : Consent revisited: points to consider. Health Law Rev 2005; 13: 33–38.
Hoeyer K : The ethics of research biobanking: a critical review of the literature. Biotechnol Genet Eng Rev 2008; 25: 429–452.
Tupasela A, Sihvo S, Karoliina S, Jallinoja PA, Aro AR, Hemminki E : Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand J Public Health 2010; 38: 45–52.
Kettis-Lindblad A, Ring L, Viberth E, Hansson MG : Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study. Scand J Public Health 2007; 35: 148–156.
Goodson ML, Vernon BG : A study of public opinion on the use of tissue samples from living subjects for clinical research. J Clin Pathol 2004; 57: 135–138.
Hoeyer K, Olofsson BO, Mjörndal T, Lynöe N : The ethics of research using biobanks: reason to question the importance attributed to informed consent. Arch Intern Med 2005; 165: 97–100.
Hemminki E, Tupasela A, Jallinoja P, Aro AR, Snell K, Sihvo S : Finnish people's attitudes towards biomedical research and its sponsorship. Genomics Soc Policy 2009; 5: 67–79.
Spencer B, Koutaissoff D, Lehr HA : Informed consent: biobank donors should have a say. Nature 2012; 481: 443–443.
Von Schomberg R : Prospects for technology assessment in a framework of responsible research and innovation; in Dusseldorp M, Beecroft R (eds): Technikfolgen Absch Tzen Lehren: Bildungspotenziale Transdisziplin Rer Methoden. Vs Verlag: Wiesbaden, 2012, pp 39–61.
Gaskell G, Stares S, Allansdottir A et al Europeans and Biotechnology in 2010: Winds of Change, European Commission, Eurobarometer, EUR 24537 Luxembourg: Publications of the European Union, 2010.
Barber B : The Logic and Limits of Trust. Rutgers University Press: New Brunswick, NJ, 1983.
Bauer M, Gaskell G (eds): Qualitative Researching with Text, Image and Sound. Sage: London, 2000.
Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM : Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J 2007; 30: 373–382.
Krippendorff K : Content Analysis. An Introduction to its Methodology. Los Angeles: Sage, 2004.
Acknowledgements
G Gaskell acknowledges the support of the Science in Society Programme of the European Commission's FP7 (www.stepe.eu). H Gottweis acknowledges the support of the Austrian Genome Project (GEN-AU), PrivatGen, and the EC Programme for Research and Development FP7 (www.bbmri.eu) and the National Research Foundation of Korea Grant (NRF-2010-330-B00169).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Competing interests
The authors declare no conflict of interest.
Additional information
Supplementary Information accompanies the paper on European Journal of Human Genetics website
Supplementary information
Rights and permissions
About this article
Cite this article
Gaskell, G., Gottweis, H., Starkbaum, J. et al. Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. Eur J Hum Genet 21, 14–20 (2013). https://doi.org/10.1038/ejhg.2012.104
Received:
Revised:
Accepted:
Published:
Issue date:
DOI: https://doi.org/10.1038/ejhg.2012.104
Keywords
This article is cited by
-
When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes
Journal of Religion and Health (2024)
-
Assessment of willingness of Saudi public to participate in a dental biorepository for research purposes
BMC Oral Health (2023)
-
Public attitudes towards genomic data sharing: results from a provincial online survey in Canada
BMC Medical Ethics (2023)
-
To donate or not to donate? Future healthcare professionals’ opinions on biobanking of human biological material for research purposes
BMC Medical Ethics (2023)
-
REPRESENT recommendations: improving inclusion and trust in cancer early detection research
British Journal of Cancer (2023)
