Affiliated staffChoon Key Chekar, Heather Strange
The BBMRI initiative was set up to investigate the necessary conditions of maximising the value of biological collections across Europe. The hypothesis was that while biological resources have been established in different countries, in order to deliver significant public health benefits, the greater statistical power that can be gained from bringing these together is desirable. Of the several work packages in BBMRI, Cesagen participated in the ELSI one, co-ordinated by Amme Cambon-Thomsen in Toulouse. Cesagen was responsible for the ethics and gender deliverables.
To consider the challenges for harmonisation between different biobanks in ethics: specifically, what does harmonisation mean in ethics?
To explore the gender aspects of biobank research.
The harmonisation objective was pursued by means of a literature review.The ‘gendering biobanks’ objective involved interviews with key scientists and stakeholders in and outside the BBMRI initiative, about the ways in which biobanks have gender implications. These could include gender balance in participation, gender balance in positions of authority, scientific input, beneficiaries and so on.
It emerged that harmonisation was best regarded as a process rather than an end point in ethics. A view of harmonisation somewhat different from its meaning in EU policy was found to be applicable. Areas for standard setting might include informed consent, but in areas such as feedback harmonisation was the better concept. The concept of privacy needs to be rethought.
Chadwick, R. and Strange, H. (forthcoming) ‘Biobanking across borders: the challenges of harmonisation’
Chadwick, R. (2010) ‘What future is there for privacy in genomics?’, The Hub (BBMRI Newsletter), 2
Chadwick, R. and Strange, H. (2009) ‘Harmonisation and standardisation in ethics and governance: conceptual and practical challenges’, in H.Widdows and C.Mullen (eds) The Governance of Genetic Information: Who Decides, Cambridge: Cambridge University Press, pp 201-213
The work package on ELSI also included work by Herbert Gottweis, Jasper Bovenberg, Emmanuelle Sebbag and Michaela Mayrhofer, in addition to the co-ordinator.
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