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J. Pers. Med. 2016, 6(2), 17; doi:10.3390/jpm6020017

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

1
Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USA
2
Massachusetts General Hospital, Boston, MA 02114, USA
3
Partners Research Information Systems and Computing, Partners HealthCare Systems, Boston, MA 02115, USA
4
Human Research Affairs, Partners HealthCare, Boston, MA 02116, USA
5
Department of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USA
6
Department of Neurology and the Center for Human Genetic Research, Boston, MA 02114, USA
7
Channing Division of Network Medicine, Brigham and Women’s Hospital, Boston, MA 02115, USA
8
Psychiatric and Neurodevelopmental Genetics Unit, Center for Human Genetic Research, Boston, MA 02114, USA
*
Author to whom correspondence should be addressed.
Academic Editor: Stephen B. Liggett
Received: 14 April 2016 / Revised: 8 May 2016 / Accepted: 3 June 2016 / Published: 9 June 2016
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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. View Full-Text
Keywords: biobank; electronic consent; precision medicine; informed consent biobank; electronic consent; precision medicine; informed consent
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

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MDPI and ACS Style

Boutin, N.T.; Mathieu, K.; Hoffnagle, A.G.; Allen, N.L.; Castro, V.M.; Morash, M.; O’Rourke, P.P.; Hohmann, E.L.; Herring, N.; Bry, L.; Slaugenhaupt, S.A.; Karlson, E.W.; Weiss, S.T.; Smoller, J.W. Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research. J. Pers. Med. 2016, 6, 17.

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