Perceptions of legislation relating to the sharing of genomic biobank results with donors-a survey of BBMRI-ERIC biobanks.

摘要: Biobanks accumulate huge amounts of research findings, including participants’ genomic data. Increasingly this leads to biobanks receiving results that could be clinical significance biobank participants. The EU Horizon 2020 Project ‘Genetics Clinic the Future’ surveyed European biobanks’ perceptions legal and regulatory requirements for communicating individual donors. goal was gain background knowledge possible future guidelines, especially relating consent process. Survey implemented using a web-based Webropol tool. questionnaire sent at end 2015 351 in 13 countries are members BBMRI-ERIC (Biobanking Biomolecular Resources Research Infrastructure–European Infrastructure Consortium). Seventy-two responded survey, representing each BBMRI Member States. Respondents were mainly individuals responsible governance biobanks. replies indicate majority respondents thought their national legislation allowed them contact participants communicate results, had right request results. However, respondents’ understanding varied even within member states. Our applied many may scattered difficult interpret. In BBMRI-ERIC, there is an ongoing discussion about need recommendations on sharing with donors, which pave way more coherent global guidelines. form basis work.