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[Biobanks and the return of results to donors].

Eric Vermeulen ,
Martin Boeckhout ,
Gerhard A Zielhuis ,
Rachel Bakker ,
A C J W Cecile Janssens ,
Marjanka K Schmidt

Abstract

Biobanks should return clinically significant and actionable research findings to donors who have given physical material to the biobank. Because the clinical significance of a research finding is hard to determine for the individual donor, a procedure to decide on clinical significance should be incorporated into a structure for the actual feedback of research results. Most published studies show that donors expect return of individual research results, but there is almost no experience with it. Explorative questionnaire-based research among Dutch biobanks from the BioBanking Medical Research Infrastructure (BBMRI.NL) shows that a substantial group of biobanks can return individual research findings from data analysis. On the basis of these experiences a return of results policy may be drafted that answers to the interests of donors and the possibilities of biobanks.

More about this publication

Nederlands tijdschrift voor geneeskunde

Volume 158
Issue nr. 5
Pages A6653
Publication date 30-01-2014

Full text links

Publisher website (DOI) 24472337
Europe PubMed Central 24472337

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