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Assessing Democratic Governance of Genomics

Theo Papaioannou

Funding: ESRC Innogen Centre

November 29 2008 – January 29 2010

Background

The successful decoding of the human genome at the beginning of the twenty-first century and subsequent advances in the new scientific-technological field of genomics revolutionised biomedical research and paved the way to the ‘post-genomic’ era.

In this context, many traditional small-refrigerator based biobanks have been transformed into sophisticated storage centres, containing DNA samples from large-scale populations. Given the high sensitivity of DNA samples/health-records combined data, critiques of biobanks raise a number of legal, ethical and socio-political issues, including the risk of violation of fundamental individual rights.

In response to them, advocates put forward the argument of ‘public good’ and ‘public interest’.

The challenge of achieving a balance between individual risks and public benefits raises the question of democratic governance of large-scale population biobanks.

Aims and objectives

The aim of this project is to ‘evaluate’ processes of democratic steering of new life science technologies. The focus of research is on large-scale population biobanks.

The project first draws on contemporary theories of democracy in order to develop a set of valid indicators of assessment. Secondly, it applies these indicators to specific cases of large-scale population biobanks, identifying ‘gaps’ and ‘good practices’ in their processes of democratic governance.

Research methods

The project will establish measures to assess governance of new life science technologies against participation, openness, accountability, freedom of choice, etc.

Data will be collected through documents and case studies of specific countries and regulatory regimes.

Project update

Dr Papaioannou is currently developing a semi-structured questionnaire for field work in the UK Biobank.