BIOPHYSICAL SOCIETY NEWSLETTER
8
OCTOBER
2014
Public Affairs
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
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
,
