Data in Question survey on ELSI challenges in biobank-based research receives 400 responses

What social, ethical and legal challenges do researchers and stakeholders in the field of biobanking face that impact practices related to the handling and sharing of biological samples and health-related data?

To answer this important question, the BBMRI-ERIC Common Service ELSI recently conducted the “Data in Question” survey in collaboration with the COST action CHIPME, the FP7 project RD-connect, the H2020 project ADOPT BBMRI-ERIC, the IMI project DO-IT, and Biobank Norway.

The response rate was excellent: when the survey closed at the end of March 2018, the sample collected consisted of 400 respondents from 32 countries. The responses were collected using an online questionnaire that was made available throughout the BBMRI-ERIC network of biobankers and other associated networks. We are grateful for all the efforts that were made and would like to thank everyone that took the time to fill in the survey.

The main topics covered by the survey were the following:

(1) secondary use of data,

(2) informing and/or re-contacting participants,

(3) sharing of data with third parties from industry,

(4) participant engagement, and

(5) collaboration with industrial partners.

Once the empirical evidence collected has been analysed, it will provide a basis for the future development of guidelines, tools and support following a bottom-up and practical approach, in particular with regard to new legislation such as the EU General Data Protection Regulation, and the growing demand for systematic engagement with third parties.

The results of the survey will be presented at Europe Biobank Week 2018 in Antwerp.