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. 2016 Jun 9;6(2):17.
doi: 10.3390/jpm6020017.

Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research

Natalie T Boutin  1 , Kathleen Mathieu  2 , Alison G Hoffnagle  3   4 , Nicole L Allen  5   6 , Victor M Castro  7 , Megan Morash  8 , P Pearl O'Rourke  9 , Elizabeth L Hohmann  10   11 , Neil Herring  12 , Lynn Bry  13 , Susan A Slaugenhaupt  14   15 , Elizabeth W Karlson  16 , Scott T Weiss  17   18 , Jordan W Smoller  19   20
Affiliations

Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research

Natalie T Boutin et al. J Pers Med. .

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.

Keywords: biobank; electronic consent; informed consent; precision medicine.

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Figures

Figure 1
Figure 1
Screenshots from the Biobank eIC website, illustrating key components of the eIC presentation, (Illustration of eIC design).
Figure 2
Figure 2
Overview of workflow for eIC at the Partners Biobank.
Figure 3
Figure 3
Timeline of the number of participants enrolled until January 2016 by in-person consent (blue) and eIC (red), which began in June 2014.
Figure 4
Figure 4
Sample collection rate by in-person consent (red) and eIC (blue) from 1 June 2014 through December 2015.
See this image and copyright information in PMC

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