Biophysical Society Newsletter - October 2014

8

BIOPHYSICAL SOCIETY NEWSLETTER

2014

OCTOBER

Public Affairs

researchers to get consent from participants for future unspecified use of their genomic data.” For complete information about genomic data sharing and a link to the GDS policy, see http:// gds.nih.gov. 2014 Golden Goose Award Winners Honored The 2014 class of Golden Goose Award winners were honored at a reception on September 18 at the Library of Congress in Washington, DC. The Award, in its third year, honors scientists whose federally funded research may not have seemed to have significant practical applications at the time it was conducted but has resulted in major economic and other benefits to society. The 2014 winners are: Saul Schanberg , professor at Duke University before his death in 2009; Tiffany Martini Field , director of the Touch Research Institute and professor in the Department of Pediatrics, Psy- chology and Psychiatry at the University of Miami Medical School; Cynthia Kuhn , professor of pharmacology and cancer biology at the Duke University School of Medicine; and Gary Evoniuk , director of publication practices at GlaxoSmith- Kline for their discovery that touch, in the form of infant massage, can vastly improve the outcome for babies born prematurely. The discovery arose from NIH-funded research on infant rats and has affected millions of lives around the world and saved billions of dollars in healthcare costs in the United States alone. The ground breaking work was conducted at Duke University in 1979 by Schanberg, Kuhn, and Evoniuk and at the Univer- sity of Miami by Field; Larry Smarr , professor of computer science and engineering at the University of California, San Diego, and Director of the California Institute for Telecommunications and Information Technol- ogy, for his NSF-funded research on colliding black holes in space that led to the development of US supercomputing capabilities and the creation of the first Internet browsers; and Robert Wilson ,

NIH Unveils New Genomic Data Sharing Policy The National Institutes of Health issued a final NIH Genomic Data Sharing (GDS) policy on August 26. The new policy takes affect for appli- cations submitted for the January 25, 2015 receipt date and applies to all NIH-funded, large-scale human and non-human projects that generate genomic data. The GDS policy is an extension of and replaces the Genome-Wide Association Stud- ies (GWAS) data sharing policy. Since 2007, the GWAS policy has governed biomedical research- ers’ submission and access to human data through the NIH database for Genotypes and Phenotypes (dbGaP). GWAS made some information and data available to the public without restrictions, while other data was made available only for research purposes consistent with the consent provided by participants in the original study. The two-tiered system will continue under the GDS policy, but researchers are now expected to obtain the informed consent of study participants for the potential future use of their de-identified data for research and for broad sharing. Investiga- tors will also be expected to use data only for the approved research, protect data confidentiality (including not sharing the data with unauthor- ized people), and acknowledge data-submitting investigators in presentations and publications. Institutions will also be required to certify that data were collected in a legal and ethically appro- priate manner and personal identifiers have been removed, and institutions as well as investigators must include plans to follow the GDS policy in their funding proposals. “The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully,” said Kathy Hudson , NIH deputy director for science, outreach and policy, in a press release. The GDS policy outlines the responsibilities of investigators and institu- tions that are using the data and also encourages