Society needs biobanks because biobanks can contribute greatly to the health of the European population. But biobanks also need society:
in the form of generalized support for biobank projects;
cooperation of patients and healthy individuals
trust generated towards biobanks (Cambon-Thomsen, 2004).
In democratic societies, science, and even more so “big science” (such as BBMRI), cannot succeed without strong social and political support, social understanding and the resulting social legitimacy (Gottweis, 2005a).
September 11, 2009
Remit of BBMRI To develop an infrastructure which is “properly embedded into European ethical, legal and societal frameworks” FP7, Grant Agreement Nr. 212111
Opportunity to consent – common standard helps ensure equality of concern for each voice.
Access and feedback – of less concern? Differing standards may be acceptable?
Privacy – complex area; maintenance of dialogue essential.
For both BBMRI and Ethics : Harmonisation is ongoing process driven by the interplay of many different voices, including those less often heard, in relation to the ‘text’ of the standards in question. Results must be fit for purpose: dialogue must be focused upon problem at hand.
FP7, Grant Agreement Nr. 212111 September 11, 2009