International guidelines on biobank research leave researchers in ambiguity: why is this so?
- 609 Downloads
KeywordsBodily Integrity Observational Research Broad Consent Board Evaluation Cultural Authority
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.
Conflict of interest
All authors declare that they have no conflicts of interest.
- 1.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.Google Scholar
- 7.Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS; 2002.Google Scholar
- 8.Skloot R. The immortal life of Henrietta Lacks. New York: Crown Publishing Group; 2010.Google Scholar
- 9.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.Google Scholar
- 14.SOU. En ny biobankslag: Betänkande av biobanksutredningen. Stockholm: Fritzes offentliga publikationer, 81; 2010.Google Scholar
- 15.Council for International Organizations of Medical Sciences. International ethical guidelines for epidemiological studies. Geneva: CIOMS; 2008.Google Scholar
- 16.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.Google Scholar
- 17.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.Google Scholar
- 18.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.Google Scholar