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NIH issues final Genomic Data Sharing policy

BY Michael Johnsen

BETHESDA, Md. — The National Institutes of Health has issued a final NIH Genomic Data Sharing policy to promote data sharing as a way to speed the translation of data into knowledge, products and procedures that improve health while protecting the privacy of research participants. The final policy was posted in the Federal Register Aug. 26, 2014 and published in the NIH Guide for Grants and Contracts Aug. 27, 2014.
 
“Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics and therapeutics for patients,” stated Kathy Hudson, NIH deputy director for science, outreach and policy. “The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully. The GDS policy outlines the responsibilities of investigators and institutions that are using the data and also encourages researchers to get consent from participants for future unspecified use of their genomic data.”
 
Starting with funding applications submitted for a Jan. 25, 2015, receipt date, the policy will apply to all NIH-funded, large-scale human and non-human projects that generate genomic data. This includes research conducted with the support of NIH grants and contracts and within the NIH Intramural Research Program. NIH officials finalized the policy after reviewing public comments on a draft released in September 2013.
 
The GDS policy can be traced to the Human Genome Project, completed in 2003, which required rapid and broad data release during its mapping and sequencing of the human genome. The GDS policy is an extension of and replaces the Genome-Wide Association Studies data sharing policy. Since 2007, the GWAS policy has governed biomedical researchers’ submission and access to human data through the NIH database for Genotypes and Phenotypes (dbGaP). Its two-tiered data distribution system has made some information and data available to the public without restrictions. Access to other data has been controlled and made available only for research purposes consistent with the consent provided by participants in the original study.
 
Under the GWAS policy, more than 2,200 investigators from 41 different countries have received access to dbGaP data from 304 studies and produced more than 900 publications. A report on genomic data sharing through dbGaP under the GWAS policy appears in the Aug. 27, 2014, advance online issue of Nature Genetics. The report was written by members of the NIH Genomic Data Sharing policy team.
 
Along with statistics about the use of dbGaP data, the Nature Genetics report outlines the challenges facing the field, such as the increased volume and complexity of genomic data.
 
“Advances in DNA sequencing technologies have enabled NIH to conduct and fund research that generates ever-greater volumes of GWAS and other types of genomic data,” noted Eric Green, NHGRI director, report co-author and a co-chair of the trans-NIH committee that developed the GDS policy. “Access to these data through dbGaP and according to the data management practices laid out in the policy allows researchers to accelerate research by combining and comparing large and information-rich datasets.”
 
A key tenet of the GDS policy is the expectation that researchers obtain the informed consent of study participants for the potential future use of their de-identified data for research and for broad sharing. NIH also has similar expectations for studies that involve the use of de-identified cell lines or clinical specimens.
 
The two-tiered system for providing access to human data is based on data sensitivity and privacy concerns developed under the GWAS policy will continue. For controlled-access data, investigators will be expected to use data only for the approved research, protect data confidentiality (including not sharing the data with unauthorized people), and acknowledge data-submitting investigators in presentations and publications.
 
NIH expects any institution submitting data to certify that the data were collected in a legal and ethically appropriate manner and that personal identifiers, such as name or address, have been removed. The NIH GDS policy also expects investigators and their institutions to provide basic plans for following the GDS policy as part of funding proposals and applications.
 
 
 
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Bartell Drugs, Metropolitan Market to celebrate Seahawks’ season kick off

BY Antoinette Alexander

SEATTLE — Seattle-based Bartell Drugs and Metropolitan Market are hosting a rally this week to celebrate the Seattle Seahawks’ season kick off.

Hours before the World Champion Seattle Seahawks begin to defend their World Championship trophy on Thursday, Bartell Drugs and Metropolitan Market will unfurl their mammoth (30×50 ft., 1,500-sq.-ft.) #12 flag at public rally in West Seattle honoring the Seahawks and their fans.

Open to the public starting at 11 a.m. on Thursday, Bartell Drugs will host a photo booth with a giant “12” backdrop, games and contests with prizes, plus radio personalities and surprise guests. Metropolitan Market will provide samplings from their stores. In addition, former Seattle Seahawk Joe Tafoya and WSU Cougar great and former NFL quarterback Jack Thompson will team up to grip the halyard at 12:30 p.m. to raise #12 to new heights.
 

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Costco, Texas A&M team up for Back-to-College Roadshow

BY Antoinette Alexander

ISSAQUAH, Wash. — Beginning this week, Texas A&M University will partner with collegiate apparel supplier, Knights Apparel, to launch the Costco Back-to-College Tailgate Roadshow featuring Aggie Gameday apparel.

Texas A&M and Knights Apparel will utilize the reach of Aggie connections via social media channels to promote the Costco Back-to-College Tailgate Roadshow event and drive traffic to the 20 participating Costco locations that will exclusively carry the merchandise.

In addition, the Center for Retailing Studies at Mays Business School and Ramkumar Janakiraman, associate professor of marketing, will lend academic analysis to the project by exploring social media on ROI. After the promotion ends on Oct. 10, Janakiraman will evaluate the impact of engagement from Texas A&M’s official Facebook, Twitter, Pinterest and LinkedIn channels on product sales.

“Dr. Janakiraman’s strategic analysis of the effect of social media marketing on sales offers valued business insights for the retailer. By correlating weekly point-of-sale data with a concentrated social media campaign, we provide the retailer with scientifically derived metrics on the value of online engagement. We expect to provide added value to store traffic and sales, and therefore justify larger floor space for next season. The more floor space, the greater possible sales for the vendor,” stated Kelli Hollinger, director of the center.

Hollinger added: “We hope the Roadshow at Costco research partnership will develop a road map for how businesses can uniquely partner with university brand and academic researchers.”

 

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