BBMRI ELSI WORKSHOP REPORT

Short Summary

Rational and main objectives

There is a growing international recognition that greater access to, and sharing of research data and bio-specimen collections could help to optimize their long-term value and exploit their potential for health-related discoveries. Currently, the increasing value of data and bio-specimen collections does not correspond with an equal increase in data/sample-sharing and data/sample access. Ideally, data and biospecimens would be made widely available in an ethically responsible manner to an inclusive group of researchers who could make sound use of them. However, there are logistical, legal and ethical challenges to widespread access. Moreover, there is often resistance by institutions and individuals who fear that they will not receive recognition for their investment in building collections. Since the sharing of data and samples is, in some instances, an essential and/or greatly facilitating element to making novel biomedical discoveries, we must further consider how to further support sharing at all levels (regional, national, international). Furthermore, from a patient perspective, if sharing could lead to a useful discovery, patients may feel that it is a moral imperative for researchers to share samples and data. Indeed, the discussion around sharing and increase access is often held among a select group of stakeholders (often academics) thereby potentially ignoring the values, and agendas of pertinent stakeholders. The discussion around access and sharing should be had with a wide range of stakeholders and different values and needs should be considered.

The main aim of this meeting was to discuss the ethical, legal and social issues surrounding increased access and sharing of biomedical samples and data, including the barriers and potential solutions. In doing so, we also achieved two other important goals to the functioning of BBMRI-ERIC ELSI group: i) members of different national nodes were able to meet, often for the first time; and ii) members were presented with the basic information surrounding the ethical, legal and social implications of sharing data and samples, thus bringing everyone to the same informational level. Both of these sub-goals will facilitate future work in the BBMRIERIC ELSI group.

Find the full report HERE!