SURVEY: POLICIES AND PRACTICES CONCERNED WITH SHARING INDIVIDUAL BIOBANK RESULTS WITH PARTICIPANTS

Do we share – or do we not share – results with donors?

Policies, practices and opinions of all BBMRI biobanks on sharing biobank results with donors are surveyed by the EU Horizon 2020 funded Genetics Clinic of the Future (GCOF) project.

In Europe we do not have an official policy on sharing individual (genomic) biobank results with donors. The GCOF is surveying current practices and opinions on how this should be done, in order to learn from each other. The results of the survey will greatly help in forming the basis of future guidelines.

“I think this work is very important, and I like to follow it closely.”

• Prof. Jan-Eric Litton, PhD, Director General, BBMRI-ERIC

The questionnaire starts with basic questions about your biobank and your national regulation as well as your consent process. The questionnaire then has two sections: the first relates to situations where the biobank actively contacts donors offering them (some) results; the second concerns situations where a donor approaches the biobank with the wish to get (some) results from the biobank. If your biobank never shares results in either of these ways, the questionnaire is very brief. The final part of the questionnaire asks your opinions about the possible future role of genetics clinics in these processes.

The first replies are already accumulating! The project will offer a summary of the results early next year.

Please, visit the survey: https://www.webropolsurveys.com/S/757AEFDAF223D891.par

Open until 10^th of December 2015

Every answer is valuable.

For more information, please contact:

Helena Kääriäinen

Research Professor, MD, PhD
National Institute for Health and Welfare (THL), Finland
helena.kaariainen@thl.fi
tel. +358 29 524 8311

Minna Brunfeldt

Planning Officer, MSc
National Institute for Health and Welfare (THL), Finland
minna.brunfeldt@thl.fi
tel. +358 29 524 7481