Article

Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.
Genome Research (impact factor: 13.61). 06/2011; 21(7):1001-7. DOI:10.1101/gr.120329.111 pp.1001-7
Source: PubMed

ABSTRACT In 2007, the National Human Genome Research Institute (NHGRI) established the Electronic MEdical Records and GEnomics (eMERGE) Consortium (www.gwas.net) to develop, disseminate, and apply approaches to research that combine DNA biorepositories with electronic medical record (EMR) systems for large-scale, high-throughput genetic research. One of the major ethical and administrative challenges for the eMERGE Consortium has been complying with existing data-sharing policies. This paper discusses the challenges of sharing genomic data linked to health information in the electronic medical record (EMR) and explores the issues as they relate to sharing both within a large consortium and in compliance with the National Institutes of Health (NIH) data-sharing policy. We use the eMERGE Consortium experience to explore data-sharing challenges from the perspective of multiple stakeholders (i.e., research participants, investigators, and research institutions), provide recommendations for researchers and institutions, and call for clearer guidance from the NIH regarding ethical implementation of its data-sharing policy.

0 0
 · 
1 Bookmark
 · 
35 Views
Data provided are for informational purposes only. Although carefully collected, accuracy cannot be guaranteed. The impact factor represents a rough estimation of the journal's impact factor and does not reflect the actual current impact factor. Publisher conditions are provided by RoMEO. Differing provisions from the publisher's actual policy or licence agreement may be applicable.

Keywords

administrative challenges
 
clearer guidance
 
combine DNA biorepositories
 
data-sharing challenges
 
data-sharing policies
 
data-sharing policy
 
electronic medical record
 
Electronic MEdical Records
 
ethical implementation
 
GEnomics
 
health information
 
high-throughput genetic research
 
major ethical
 
multiple stakeholders
 
National Human Genome Research Institute
 
National Institutes
 
research institutions
 
research participants
 
researchers
 
sharing genomic data