The future of Biobanks, practical, ethical and legal issues

Organiser: Assoc. Professor Marta E. Alarcón-Riquelme

Report

Information about genes, transcripts and proteins, accumulating as a consequence of the human genome project provide enormous opportunities to study the involvement of these factors in basic biologcal processes and in disease. The availability of human material in the form of extensive samples DNA, RNA and tissues will be of critical importance in this work, and this in turn requires that such materials are collected, stored, and evaluated in an optimal manner both from technical and scientific points of view, as well as by taking into account ethical, economical, and legal considerations. The range of different European populations provide particular value in different research projects depending on factors such as the age and homogeneity of to the population, the quality of the health care, and the availability of data on geneology, and medical and epidemiological factors. The scientific and commercial importance attributed to such sample resources is clearly evidenced by companies such as DeCode Genetics, colleting and evaluating samples from a large segment of the Icelandic population. There is, however, currently little knowledge as to optimal means to collect and to store human biobanks, or how to organize and manage them, or their scientific uses. It is particularly important to define ethically acceptable mechanisms to ensure the integrity of the sample donors, and to avoid unacceptable commercial exploitation. This is clearly a question where unique opportunities are present in Europe, and where some degree of consensus will be required at a European level on how to manage and organize such collections. Contacts and some degree of standardisation will be required to allow scientific collaborations on a European level. There is also a need for scientists to define the potential and optimal use of biobanks, as a background to national legislation in order to avoid that damaging limitations are imposed e.g. on the right to use samples for future investigations, the nature of which may not be possible to predict at the time of sample collection.

The purpose of the workshop was to bring together scientists and other individuals with experience from various aspects of the topic from all around Europe.

This is probably the first time that a combination of geneticists, sociologists and other representatives from society are together discussing a subject of major relevance for the future of science, and in particular genomics. Examples on how to organise biobanks properly were presented, including the very ambitious UK biobank project aiming at the collection of 500,000 samples from individuals all around the United Kingdom. The program was divided into the applications, with a focus on genetics and population genetics and an intense discussion on the ethical issues. Then practical aspects through presentations by specific biobanking projects in diverse areas and finally the ethical and legal aspects, touching the example of the new law on biobanking in Sweden and its great differences with the laws proposed in the other Nordic countries. We also included small 10 minute presentations by participants in order to make a more dynamic interaction and promote discussion, which was certainly attained.

The workshop was well attended and provided all of the participants with very good information about ongoing biobanking projects, possibilities for biobanking and excellent examples.

List of Participants