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The PRIVILEGED project was looking to determine the ethical and legal interests in privacy and data protection for research involving the use of genetic databases and biobanks. It was funded by the European Commission from 2007 to 2009, and had 32 member institutions from the European Union, European Economic Area and three non-European countries Israel, Japan and Taiwan. The Project was coordinated by Dr Mark Taylor based at the Sheffield Institute of Biotechnological Law and Ethics, School of Law, University of Sheffield, and David Townend based at the Faculty of Health, Medicine and Life Sciences, Department of Health, Ethics & Society, Maastricht University, with the help of partner institutions Biomedical Law Centre, University of Coimbra, Portugal and Department of Medical History and Ethics, Vilnius University, Lithuania.

The primary objectives of PRIVILEGED were organised through three workshops, reports, and publications. PRIVILEGED brought together the expertise of 45 national participants and their dialogues national, regional, and European/international levels. The dialogue between the participants was supported through organising them in three regions to explore whether there are significant differences in the social, cultural, and regulatory approaches to research into genetic information and biobanking. Each participant has produced a written national report in advance of each workshop, addressing guidance questionnaires. These reports form the basis of comparative Regional Reports prepared in advance of the workshops to assist the discussions, by the regional co-ordinators and principal investigators.

The first project workshop took place from the 9th - 11th January 2008 in Bawtry, UK. This workshop facilitated discussions on Stage One of the project, in particular on 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. Key findings as well as lacunas were identified.

The second project workshop was held on the 13th and 14th November 2008 in Coimbra, Portugal.  This workshop facilitated discussions on Stage Two of the project, in particular on 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, during the the workshop five particular areas of concern that cut across the geographical groupings were identified.

Based on the answers to the Stage One and Stage Two questionnaires and the discussions at the Workshops, the regional co-ordinators have prepared two comparative reports, particularly drawing out regional differences. These “Regional Reports” can be found under Project Materials.

The third project workshop took place from the 22nd - 24th June 2009 in Vilnius, Lithuania. This workshop facilitated discussions in groups focussing on the five key areas identified during the second workshop, which are of particular importance for the protection of privacy when either genetic information or tissue samples are used in research. These key issues cut across regions. Stage three of the project is focussed on developing specific recommendations on each of these issues. The five key issues are

  • Access: Who should have access to the data and tissues held in genetic databases and biobanks?
  • Consent: What are the information requirements for a valid consent in genetic research?
  • Tissue: Do we need to look beyond the data protection and clinical trials regimes to regulate research using tissue?
  • Scope of Personal Data: Can the definition of personal data in the Data Protection Directive be interpreted to include tissues, relatives or deceased persons?
  • Research Exemption: Is it legitimate to provide exemptions to the data protection requirements for research purposes?

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.