Abstract
The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Biobank) implemented eIC tools and processes to complement traditional recruitment strategies in June 2014. Since then, the Partners Biobank has rigorously collected and tracked a variety of metrics relating to this novel recruitment method. From June 2014 through January 2016, the Partners Biobank sent email invitations to 184,387 patients at Massachusetts General Hospital and Brigham and Women’s Hospital. During the same time period, 7078 patients provided their consent via eIC. The rate of consent of emailed patients was 3.5%, and the rate of consent of patients who log into the eIC website at Partners Biobank was 30%. Banking of biospecimens linked to electronic health records has become a critical element of genomic research and a foundation for the NIH’s Precision Medicine Initiative (PMI). eIC is a feasible and potentially game-changing strategy for these large research studies that depend on patient recruitment.
Highlights
Biobanks, which compile, process, and store human biological specimens for future research purposes, have become a key platform for enabling biomedical research [1]
An important element of the IRB approval for electronic informed consent (eIC) was the determination that the Biobank is a “minimal risk” study and that the Biobank is not targeting any specific population within the healthcare system
Over the past five years, Partners HealthCare has established a Biobank of patient samples linked to longitudinal electronic health records
Summary
Biobanks, which compile, process, and store human biological specimens for future research purposes, have become a key platform for enabling biomedical research [1]. Biobank specimens are often linked to medical health records or supplemented with other data to enable genetic or biomarker studies of a diverse range of clinical phenotypes. These biobanks are excellent resources for the study. Med. 2016, 6, 17 of genetically complex or rare diseases, as both require large numbers of specimens to perform genetic and biomarker studies [2]. Large biobanks are a powerful resource for longitudinal studies of disease course and treatment outcomes. Biobanks that include broad phenotypic data have enabled phenome-wide association studies that can identify novel genetic risk factors and characterize the penetrance and spectrum of their phenotypic effects [3].
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