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DATA IN QUESTION: A SURVEY ON ELSI CHALLENGES IN BIOBANK-BASED RESEARCH

The purpose of the survey is to identify challenges arising from legal, ethical or social developments from the perspective of those persons who have experience as researchers or of other professional activities related to biobanks and/or collections of biological samples, and to explore the effect of the growing demand for engaging with third parties from industry, patients or citizens. By biobanks we mean public, population, and disease-oriented biobanks, including comparable research facilities, hospitals or companies, which systematically collect, store, distribute, and/or perform research with human biological samples and data.

We are interested in the work experiences as well as in the opinions on the following topics:

  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

We seek to learn about how informed consent (IC) practices could adapt better to the requirements of different stakeholder and novel legal frameworks (provided for example by the EU General Data Protection Regulation).

The survey is available here and will be open until February 15.

The responses will be confidential and the results of the survey will be presented in a way that will not allow identifying individual participants. The results of this study will be made available by BBMRI-ERIC.

Participants of the survey who agree to be re-contacted for further research purposes can fill in their contact details on this separate page.

If you wish to contact us, please send us an e-mail.

This survey is part of a research study being conducted by BBMRI-ERICADOPT BBMRI-ERICCOST Action CHIP MERD-ConnectIMI DO-IT, and Biobank Norway.


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