20 September 2019
Press release
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What biobankers and researchers think about ELSI

Biobanks have become complex infrastructures that play an important role in health research. In combination with the advances in molecular medicine and genomics led to ethical, legal and societal implications (ELSI). How do ELSI implications influence biobanking practices? Are the cross-national biobanking research communities satisfied with the current ELSI related procedures?

Many previous studies explored the attitudes of the public towards ethical, legal and societal implications (ELSI) of biobanking. But how do these influence biobanking practices? Are the cross-national biobanking research communities satisfied with the current ELSI related procedures? BBMRI-ERIC conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. It highlights the need for a more inclusive and transparent biobanking practice.

More inclusive and transparent

The findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current Informed Consent procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.

The full research article: Data in question: a survey of European biobank professionals on ethical, legal and societal challenges of biobank research. https://doi.org/10.1371/journal.pone.0221496

MB received funding from BBMRI-NL, a Research Infrastructure financed by the Dutch government (NWO) (https://www.nwo.nl/en), grant number 184033111.