ABSTRAKT

Biobanks provide efficient means for genetic research, but do not employ adequate measures for communicating personal health information to individual participants who contribute de-identified tissue samples. There is growing consensus that biobanks should implement systems for reporting personal health information to participants based on clinical utility. But relevant recommendations do not acknowledge the participant's interest in deciding the types of health information that she finds worth knowing. This paper addresses current biobanking protocol, and reasons for and against incorporating participant preferences into practices of delivering personal health information. It proposes a classification system for personal information discovered during research, which informed participants would use to specify their preferences before they provide tissue samples. This system would use degrees of clinical validity and utility to define categories of returnable information. Such a system would set a value threshold for personal information to prevent unnecessary costs to biobank research. In conjunction, this paper recommends refinement of participant informed consent by including genetic education and knowledge demonstration prior to tissue provision. These modifications to biobanking practices would ensure respect and empowerment for the participant, acknowledge her status as a stakeholder in genetic research, and align with democratic governance of the research endeavor.