Project Number SPB N° 32

Chairs

Professor Gertjan van Ommen, LUMC, The Netherlands
Professor Frank Skorpen, NTNU, Norway

Abstract

A multitude of national biobanks are present in Europe, however, the exchange of data and materials within the national legal frameworks is difficult. ESF/EMRC decided to engage in a Science Policy activity on Population Survey and Biobanking by organizing a Strategic Workshop with the goal to prepare and later publish an ESF Science Policy Briefing (SPB) on this important issue. Special emphasis will be given to:

Harmonization procedures for collection, storage and data structure/access

• Status of existing versus new biobanks
• Data storage and database structure
• Phenotyping and technology
• Development of a more contemporary biobanking oriented view on informed consent (ethical and legal questions)
• Toning down expectation of economic valorisation and to generally dehype expectation
• Getting good connections to environmentalists
• Assessment of the usefulness of biobanks
• Role of the public and methods of involving the public
• Developing guidelines for data sharing
• Inventory of coordinating activities (meetings, participants)

The goal of EMRC is to develop science policy on population survey and biobanking to converge the European biobanking activities, address ethical issues and to prevent fragmentation by reducing parallel activities in this field.  The topic has been approached in a multidisciplinary fashion requiring the collaboration of various scientific domains.

Status

The Strategic Workshop took place in Amsterdam, Netherland on 7-8 December 2006; a Science Policy Briefing was published in May 2008.