References
Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine, CETS no. 164. Oviedo: Council of Europe; 1997.
Hansson MG, Dillner J, Bartram CR, et al. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 2006;7(3):266–9.
Lunshof J, Chadwick R, Vorhaus D, et al. From genetic privacy to open consent? Nat Rev Genet. 2008;9:406–11.
Arnason V. Coding and consent: moral challenges of the database project in Iceland. Bioethics. 2004;18:27–49.
Knoppers BM. Biobanking: international norms. J Law Med Ethics. 2005;33:7–14.
Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J. 2007;30:373–82.
Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS; 2002.
Skloot R. The immortal life of Henrietta Lacks. New York: Crown Publishing Group; 2010.
Javitt G. Why not take all of me? Reflections on the immortal life of Henrietta Lacks and the status of participants in research using human specimens. Minn J L Sci Tech. 2010;11(2):713–55.
Knoppers BM, Chadwick R. Human genetic research: emerging trends in ethics. Nat Rev Genet. 2005;6:75–9.
Chadwick R, Berg K. Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet. 2001;2:318–21.
Rothstein MA. Is deidentification sufficient to protect health privacy in research? Am J Bioeth. 2010;10(9):3–11.
Greely HT. To the barricades! Am J Bioeth. 2010;10(9):1–2.
SOU. En ny biobankslag: Betänkande av biobanksutredningen. Stockholm: Fritzes offentliga publikationer, 81; 2010.
Council for International Organizations of Medical Sciences. International ethical guidelines for epidemiological studies. Geneva: CIOMS; 2008.
United Nations Educational, Scientific and Cultural Organization. Human genetic data: preliminary study by the IBC on its collection, processing, storage and use. UNESCO, IBC; 2002.
Council of Europe. recommendation Rec (2006) 4 of the committee of ministers to member states on research on biological materials of human origin. Council of Europe; 2005.
European Society of Human Genetics. Data storage and DNA banking for biomedical research: technical, social and ethical issues. Recommendations of the European society of human genetics. Eur J Hum Genet. 2003;11(Suppl 2):S8–10.
Hansson MG, Chadwick R. Is medical ethics doing its job? J Intern Med. 2011;269(4):366–9.
Whitney SN, Schneider CE. Viewpoint: a method to estimate the cost in lives of ethics board review of biomedical research. J Intern Med. 2011;269(4):396–402.
Noble S, Donovan J, Turner E, et al. Feasibility and cost of obtaining informed consent for essential review of medical records in large-scale health services research. J Health Serv Res Policy. 2009;14:77–81.
Aagaard-Tillery K, Sibai B, Spong CY, et al. Sample bias among women with retained DNA samples for future genetic studies. Obstet Gynecol. 2006;108(5):1115–20.
Arruda-Olson AM, Weston SA, Fridley BL, et al. Participation bias and its impact on the assembly of a genetic specimen repository for a myocardial infarction cohort. Mayo Clin Proc. 2007;82(10):1185–91.
Acknowledgments
The research for this paper was made possible by funding from the IMI project BT-CURE (Grant agreement No. 115142-1), the EU Seventh Framework Programs RD-Connect, EuroTeam, BiobankCloud and BBMRI-LPC and the BBMRI.se infrastructure project financed by the Swedish Research Council. The funders had no influence on the design and content of the article. The funders are not liable for any use that may be made of the information herein.
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Forsberg, J.S., Hansson, M.G. & Evers, K. International guidelines on biobank research leave researchers in ambiguity: why is this so?. Eur J Epidemiol 28, 449–451 (2013). https://doi.org/10.1007/s10654-013-9815-x
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DOI: https://doi.org/10.1007/s10654-013-9815-x