Journal of Personalized Medicine

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Open AccessArticle

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

by Natalie T. Boutin, Kathleen Mathieu, Alison G. Hoffnagle, Nicole L. Allen, Victor M. Castro, Megan Morash, P. Pearl O’Rourke, Elizabeth L. Hohmann, Neil Herring, Lynn Bry, Susan A. Slaugenhaupt, Elizabeth W. Karlson, Scott T. Weiss and Jordan W. Smoller

J. Pers. Med. 2016, 6(2), 17; https://doi.org/10.3390/jpm6020017 - 09 Jun 2016

Cited by 43 | Viewed by 9991

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. Full article

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Open AccessArticle

Personalized Medicine in the U.S. and Germany: Awareness, Acceptance, Use and Preconditions for the Wide Implementation into the Medical Standard

by Kateryna Kichko, Paul Marschall and Steffen Flessa

J. Pers. Med. 2016, 6(2), 15; https://doi.org/10.3390/jpm6020015 - 02 May 2016

Cited by 23 | Viewed by 10954

Abstract

The aim of our research was to collect comprehensive data about the public and physician awareness, acceptance and use of Personalized Medicine (PM), as well as their opinions on PM reimbursement and genetic privacy protection in the U.S. and Germany. In order to give a better overview, we compared our survey results with the results from other studies and discussed Personalized Medicine preconditions for its wide implementation into the medical standard. For the data collection, using the same methodology, we performed several surveys in Pennsylvania (U.S.) and Bavaria (Germany). Physicians were contacted via letter, while public representatives in person. Survey results, analyzed by means of descriptive and non-parametric statistic methods, have shown that awareness, acceptance, use and opinions on PM aspects in Pennsylvania and Bavaria were not significantly different. In both states there were strong concerns about genetic privacy protection and no support of one genetic database. The costs for Personalized Medicine were expected to be covered by health insurances and governmental funds. Summarizing, we came to the conclusion that for PM wide implementation there will be need to adjust the healthcare reimbursement system, as well as adopt new laws which protect against genetic misuse and simultaneously enable voluntary data provision. Full article

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Open AccessArticle

Barriers and Facilitators to Adoption of Genomic Services for Colorectal Care within the Veterans Health Administration

by Nina R. Sperber, Sara M. Andrews, Corrine I. Voils, Gregory L. Green, Dawn Provenzale and Sara Knight

J. Pers. Med. 2016, 6(2), 16; https://doi.org/10.3390/jpm6020016 - 28 Apr 2016

Cited by 13 | Viewed by 7608

Abstract

We examined facilitators and barriers to adoption of genomic services for colorectal care, one of the first genomic medicine applications, within the Veterans Health Administration to shed light on areas for practice change. We conducted semi-structured interviews with 58 clinicians to understand use of the following genomic services for colorectal care: family health history documentation, molecular and genetic testing, and genetic counseling. Data collection and analysis were informed by two conceptual frameworks, the Greenhalgh Diffusion of Innovation and Andersen Behavioral Model, to allow for concurrent examination of both access and innovation factors. Specialists were more likely than primary care clinicians to obtain family history to investigate hereditary colorectal cancer (CRC), but with limited detail; clinicians suggested templates to facilitate retrieval and documentation of family history according to guidelines. Clinicians identified advantage of molecular tumor analysis prior to genetic testing, but tumor testing was infrequently used due to perceived low disease burden. Support from genetic counselors was regarded as facilitative for considering hereditary basis of CRC diagnosis, but there was variability in awareness of and access to this expertise. Our data suggest the need for tools and policies to establish and disseminate well-defined processes for accessing services and adhering to guidelines. Full article

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Open AccessFeature PaperReview

Personal Genome Sequencing in Ostensibly Healthy Individuals and the PeopleSeq Consortium

by Michael D. Linderman, Daiva E. Nielsen and Robert C. Green

J. Pers. Med. 2016, 6(2), 14; https://doi.org/10.3390/jpm6020014 - 25 Mar 2016

Cited by 47 | Viewed by 11592

Abstract

Thousands of ostensibly healthy individuals have had their exome or genome sequenced, but a much smaller number of these individuals have received any personal genomic results from that sequencing. We term those projects in which ostensibly healthy participants can receive sequencing-derived genetic findings and may also have access to their genomic data as participatory predispositional personal genome sequencing (PPGS). Here we are focused on genome sequencing applied in a pre-symptomatic context and so define PPGS to exclude diagnostic genome sequencing intended to identify the molecular cause of suspected or diagnosed genetic disease. In this report we describe the design of completed and underway PPGS projects, briefly summarize the results reported to date and introduce the PeopleSeq Consortium, a newly formed collaboration of PPGS projects designed to collect much-needed longitudinal outcome data. Full article

(This article belongs to the Special Issue Implementing Personalized Medicine in a Large Health Care System)

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J. Pers. Med., Volume 6, Issue 2 (June 2016) – 4 articles

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