[Biobanks and the return of results to donors].
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.
Antoni van Leeuwenhoek - Nederlands Kanker Instituut, Amsterdam.
Eric
E
Vermeulen
Martin
M
Boeckhout
Gerhard A
GA
Zielhuis
Rachel
R
Bakker
A C J W Cecile
AC
Janssens
Marjanka K
MK
Schmidt
D018070:Biological Specimen Banks; D035843:Biomedical Research / Q000941:ethics / Q000706:statistics & numerical data; D006801:Humans; D035842:Research Subjects / Q000523:psychology*; D011795:Surveys and Questionnaires; D014019:Tissue Donors / Q000523:psychology*