Centre for Research Ethics & Bioethics (CRB)

ELSI Helpdesk: What does it do?

2016-09-22

The organisation of the ELSI Helpdesk is coordinated by the Swedish node. It gathers input from various sources and collaboration is ensured with other ELSI experts from the national nodes from the BBMRI-ERIC member states. LL.D. Moa Kindström Dahlin is the Chief Responsible Officer. Here, she offers her thoughts on the process of setting up a federated Helpdesk.

BBMRI-ERIC provides support on ethical, legal and societal issues related to biobanking activities through its Common Service ELSI. Among other things, the ELSI-group is offering practical interpretation on new legislation. It also monitors relevant ethical and legal frameworks in development and communicates publications, research results, surveys, and informs about relevant meetings. We are also setting up a federated Helpdesk. The vision and aim is to make the Helpdesk available, feasible, practical, usable, reliable, verifiable and sustainable.

BBMRI-ERIC

This Helpdesk will provide general information on topics that are crucial for biobanking, regarding for example consent, ethics approval and data protection. It will also offer customized help. The practical tools to help provide this service are currently under development together with IT experts.

Offering this service is faced with some challenges. The field covers many questions intimately connected to fundamental legal rights, and involves ethical and societal issues that often are politically controversial. Different countries have different regulations, professionals bring different perspectives and different expertise, and the knowledge of genetics and genomics is uncertain. Working with BBMRI-ERIC Common Service ELSI sometimes compares to the experience of Alice in Wonderland, looking down the rabbit hole: You cannot see where it leads but you can be sure that the hole is very deep indeed.

The challenge seems to be to decide when to stop digging, and to accept that the service can never replace local lawyering or professional advice of any sort. Researchers will always have to reflect on, and be responsible for, their practice themselves: both legally and ethically. But the BBMRI-ERIC Common Service ELSI will provide tools and expertise to navigate within this landscape of reflection.

By Moa Kindström Dahlin

Moa Kindström Dahlin, LLD
Moa Kindström Dahlin is responsible for the BBMRI-ERIC federated Helpdesk for ELSI issues

More biobank related news