Policies, practices, and experiences of European biobanks on sharing genomic biobank results with donors - a survey of BBMRI-ERIC biobanks

To study European biobanks’ policies, practices, and experiences on communicating individual research results to participants the EU Horizon 2020 Project ‘Genetics Clinic of the Future’ performed two surveys in 2016 and 2020. First, a questionnaire was sent in 2016 (Survey I) to 351 European biobanks in 13 countries that were members of Biobanking and Biomolecular Resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC). We received replies from 72 biobanks (response rate 21%), representing each of the 13 BBMRI Member States. Respondents were mainly directors or heads of biobanks. To evaluate how the policies and practices of biobanks evolved over time, we also conducted another survey in 2020 (Survey II). The Survey I was implemented using a web based Webropol tool, and the Survey II was distributed by email. The biobanks had very different policies of sharing genomic data and the policies had changed over time. The percentage of biobanks with a policy to share results with participants if they so wish had increased between 2016–2020 from 36% to 45%. On the contrary, the percentage of biobanks with a policy to pro-actively re-contact the participants to share (some) results had decreased from 52% to 39%. Still in 2020, half of the biobanks had never shared results with participants.