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J. Pers. Med. 2016, 6(1), 2; doi:10.3390/jpm6010002

Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations

1
Brigham and Women’s Hospital, Boston, MA 02115, USA
2
Partners HealthCare System, Boston, MA 02115, USA
3
Massachusetts General Hospital, Boston, MA 02114, USA
*
Author to whom correspondence should be addressed.
Academic Editor: Stephen B. Liggett
Received: 21 October 2015 / Revised: 7 December 2015 / Accepted: 23 December 2015 / Published: 14 January 2016
(This article belongs to the Special Issue Implementing Personalized Medicine in a Large Health Care System)
View Full-Text   |   Download PDF [1176 KB, uploaded 14 January 2016]   |  

Abstract

The Partners HealthCare Biobank is a Partners HealthCare enterprise-wide initiative whose goal is to provide a foundation for the next generation of translational research studies of genotype, environment, gene-environment interaction, biomarker and family history associations with disease phenotypes. The Biobank has leveraged in-person and electronic recruitment methods to enroll >30,000 subjects as of October 2015 at two academic medical centers in Partners HealthCare since launching in 2010. Through a close collaboration with the Partners Human Research Committee, the Biobank has developed a comprehensive informed consent process that addresses key patient concerns, including privacy and the return of research results. Lessons learned include the need for careful consideration of ethical issues, attention to the educational content of electronic media, the importance of patient authentication in electronic informed consent, the need for highly secure IT infrastructure and management of communications and the importance of flexible recruitment modalities and processes dependent on the clinical setting for recruitment. View Full-Text
Keywords: Biobank; Partners Biobank; biorepository; personalized medicine; precision medicine; Partners HealthCare Biobank; electronic informed consent Biobank; Partners Biobank; biorepository; personalized medicine; precision medicine; Partners HealthCare Biobank; electronic 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

Karlson, E.W.; Boutin, N.T.; Hoffnagle, A.G.; Allen, N.L. Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations. J. Pers. Med. 2016, 6, 2.

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J. Pers. Med. EISSN 2075-4426 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert
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