Biobanks and governance

Biobanks and governance

RESEARCH QUESTIONS

  1. How does governance take shape in efforts to harmonize biobanking procedures evoked by the upscaling of genomics research?
  2. How can the governance of biobanks be conceived in terms of ‘issue politics’ in order to take into account: contingencies and uncertainties (e.g. about distinctions between public and private); the entanglement of social and technical matters; and possibilities for distributed governance, in the analysis of harmonization efforts in biobanking?
  3. What can be the role of ELSA research in shaping governance arrangements for biobanking?

Duration: June 2008 - January 2013

SUMMARY
Genomics is big science. Information on and tissue samples of large groups of patients and healthy individuals are necessary to conduct medical genomics studies. More and more, these data are stored in biobanks or databases. 

This project’s aim has been to investigate the emergence of biobank governance as an ongoing concern over the distribution of responsibilities over scientific resources and the infrastructures through which they are procured, managed and made ready for use. The project’s focus was Dutch developments, with the String-of-Pearls Initiative serving as the focal point of attention. By focusing on the emergence of issues pertaining to biobanking in one particular national setting, the reconfigurations between data/tissue, procurement/participation, and access/sharing could be shown as they play themselves out in detail. 

The project’s main findings can be summarized as follows. Biomedical research has come to face a set of challenges pertaining to the governance of scientific resources. Issues of scientific value, quality and priority and issues of governance are mutually implicated. Attempts at resolving tensions often reproduce these very same tensions in other ways. This is the main irony of ‘Biobank Governance’: problems related to a lack of governance have quickly transformed into problems related to an overkill of governance. Like the infamous economic and political tensions associated with natural resources, attempts at governing tissue and data resources therefore face ‘resource curses’ or ‘Dutch diseases’ of their own, relating to their precarious associations with a multitude of different actors and a host of different resources involved in biomedical research.