title: Extending the surrogacy analogy: applying the advance directive model to biobanks.
abstract: Biobank donors and biobank governance face a conceptual challenge akin to clinical patients and their designated surrogate decision-makers, the necessity of making decisions and policies now that must be implemented under future unknown circumstances. We propose that biobanks take advantage of this parallel to learn lessons from the historical trajectory of advance directives and develop models analogous to current 'best practice' advance directives such as Values Histories and TheFive Wishes. We suggest how such models could improve biobanks' engagement both with communities and with individual donors by being more honest about the limits of current disclosure and eliciting information to ensure the protection of donor interests more robustly through time than current 'informed consent' processes in biobanking.
authors: Albert Gnaegi Center for Healthcare Ethics, Saint Louis University, Saint Louis, Mo., USA.
authors: Stephanie
authors: S
authors: Solomon
authors: Ann
authors: A
authors: Mongoven
mesh_terms: D016223:Advance Directives / Q000941:ethics / Q000331:legislation & jurisprudence / Q000523:psychology; D018070:Biological Specimen Banks / Q000458:organization & administration*; D003657:Decision Making / Q000941:ethics; D030881:Disclosure / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000331:legislation & jurisprudence / Q000523:psychology; D017146:Models, Organizational; D014019:Tissue Donors / Q000941:ethics / Q000331:legislation & jurisprudence / Q000523:psychology