Should donors be allowed to give broad consent to future biobank research?
Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. In this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.
Hansson
Mats G
MG
Centre for Bioethics at Karolinska Institute and Uppsala University, Uppsala, Sweden. Mats.Hansson@bioethics.uu.se
Dillner
Joakim
J
Bartram
Claus R
CR
Carlson
Joyce A
JA
Helgesson
Gert
G
D003219:Confidentiality; D004992:Ethics, Medical; D020022:Genetic Predisposition to Disease; D006801:Humans; D007258:Informed Consent; D012106:Research; D014015:Tissue Banks / Q000941:ethics*; D014019:Tissue Donors