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PRIVILEGED is a project looking to determine the ethical and legal interests in privacy and data protection for research involving the use of genetic databases and biobanks. It is funded by the European Commission from 2007 to 2009, and has 32 member institutions from the European Union, European Economic Area and three non-European countries Israel, Japan and Taiwan. The Project is coordinated by Dr Mark Taylor and David Townend based at the Sheffield Institute of Biotechnological Law and Ethics, School of Law, University of Sheffield, with the help of partner institutions Biomedical Law Centre, University of Coimbra, Portugal and Department of Medical History and Ethics, Vilnius University, Lithuania.The first project workshop took place in Sheffield from the 9th - 11th January 2008. This discussed the results of the first questionnaire disseminated to project members on

• Public attitudes towards genetic privacy and biobanking in their country
• Regulations concerning privacy, data protection, biobanking and data protection in their countries.

The answers helped consideration of what privacy interests are seen as arising from the use of genetic data in research across countries and whether these are based on ethical, cultural, social, individual or group considerations. The workshop identified key findings as well as lacunas. The second project workshop held in Coimbra from the 13th - 14th November 2008 discussed the results of the second questionnaire disseminated to project members on

• Identification of the specific laws and regulations which govern the use of genetic information in research and biobanking in their nation states
• Analysis of this regulation in the context of the expectations of privacy that were identified in stage one of the project
• Identification of how this regulation is observed in practice, through literature review and discussion with the relevant authorities and scientific communities in their country.

The answers helped to establish in what ways, and to what extent, data protection regulations may either be consistent or inconsistent with, or insufficient for, the protection of identified ethical interests in privacy. Discussions at the workshop paved the way towards the finalisation of stage two of the project. Furthermore, the workshop identified particular areas of concern that cut across the geographical groupings.

The project is currently in stage 3 of its work. Stage three of the project is focussing on developing specific recommendations on each of these issues.

You can contact the PRIVILEGED project for more information, or provide input into these questions for your country - please use the contact page.

How can you contribute to PRIVILEGED?

You can submit your definitions of the terms “bio-bank“, “genetic database” and “privacy” to assist the project in gaining an idea of the breadth of different opinions.Please do not hesitate to submit any ideas or references you have which may be useful for the PRIVILEGED project via the contact page.