Data in Question. Survey on ELSI Challenges in Biobank-Based Research

The European biobanking landscape continues to develop and has
become a key resource for biomedical research and innovation. The
increasing role of biobanks to improve health and fostering innovation is
accompanied by questions about the ethical, legal, and societal impacts
(ELSI) of these infrastructures.
Researchers and stakeholders in the field of biobanking are facing
different social, ethical and legal challenges related to handling and
sharing biological samples and health related data. These practices are
directly impacted by new technologies and upcoming changes in
European law, such as the new EU General Data Protection Regulation
(GDPR), which will enhance the rights for data subjects regarding the
processing of their personalised data.

Improving informed consent is one of the key challenges in this regard, as
samples and data may be shared widely between researchers and
projects, with new possibilities for data linkage, particularly in the context
of growing public-private partnerships within the health industry.
This raises questions as to whether, and to what extent participants
should be involved in future uses of their biomaterial in an emerging
research infrastructure, where the exact purposes of samples collected
prospectively are unclear at the time of donation and consent. Hence, the
increasing possibilities for research, especially with data, emphasises the
need to improve practices of informing and re-contacting participants, and
to establish new tools for participant engagement.