Biobanks for Europe - European Commission - Europa

P A T B275.2• Attitudes towards broad consentOne of the controversial aspects of biobanking has been the use of broad consent, rather thanseeking the more conventional informed consent for participants enrolling in a biobank. Whilethis has been seen as a practical solution to the fact that all research uses of the biobank cannotbe determined when participants are enrolled, this approach appears not to be supported by thegeneral public (Figure 3). Interestingly, attitudes in Europe towards broad consent are also shapedby levels of information: the more people know about biobanks, the more they are ready to givebroad forms of consent, whereas the less they know the less likely are they to participate. 70 A broadconsent has been seen as essential to facilitating biobank research.Given the lack of awareness about biobanks and the concerns about privacy and data protection,the European stake-holders in biobank research need to work hard to develop e cient mechanismsfor informing European citizens about biobank research, why it is there, and what it is doing.Creative and interactive solutions using a ‘dynamic consent’ model developed by the EnCoRe project71 and the CHRIS project 72 use Web 2.0 information architectures to enable participants to giveconsent on an ongoing basis over time. Better information about biobanks will increase recruitmentwhich is necessary for the long-term sustainability of biobanking, but also may be a key strategyfor reducing the gap in support for biobanks between Northern European and Central and SouthernEuropean countries.70 G. Gaskell H. Gottweis, J, Starkbaum, M. Gerber M. et.al., ibid.71 EnCoRe / Oxford Radcliffe Biobank (UK) http://cyber.hwcomms.com/cyber/DynamicConsent72 CHRIS – Cooperative Health Research in South Tyrol (Italy)http://www.eurac.edu/en/research/institutes/geneticmedicine/chrisstudy/default.html