| Literature DB >> 25074323 |
Stephanie Solomon1, Ann Mongoven.
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.Entities:
Mesh:
Year: 2014 PMID: 25074323 PMCID: PMC4289417 DOI: 10.1159/000364993
Source DB: PubMed Journal: Public Health Genomics ISSN: 1662-4246 Impact factor: 2.000