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• W4240936705 abstract "American Journal of Medical Genetics Part AVolume 167, Issue 1 p. viii-ix the AJMG SEQUENCEFree Access NIH policy supports broader sharing of genomic data, strengthens informed-consent rules Research participants must give consent for secondary sharing, even if data are de-identified First published: 22 December 2014 https://doi.org/10.1002/ajmg.a.36919Citations: 2AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat A new genomic data sharing (GDS) policy from the National Institutes of Health (NIH) calls upon NIH-funded researchers to share data generated from large-scale genomic studies involving human or nonhuman subjects and to get informed consent from human subjects for widespread use of data. The policy, which takes effect starting with NIH-funding applications submitted by a January 25, 2015 deadline, requires researchers in most cases to make data available to other investigators via an NIH-designated database or approved alternative within six months of completing research. The policy replaces NIH's 2007 Genome-Wide Association Studies (GWAS) guidelines that encouraged sharing of de-identified, large-scale human data and governed researchers' access to the NIH database of Genotypes and Phenotypes (dbGaP). The new policy extends data-sharing requirements to large-scale nonhuman genomic studies that use single nucleotide polymorphism (SNP) arrays or genomic sequencing to generate transcriptomic, epigenomic, and gene-expression data. Broad, responsible sharing of genomic data and its secondary use allow researchers to build upon one another's findings, thus speeding scientific advancement and limiting redundant research, says Dina Paltoo, PhD, MPH, Director of the Genetics, Health, and Society Program in the NIH Director's Office of Science Policy based in Bethesda, Maryland. “The policy will allow for reproducibility of research results and accelerate research and translation of that research,” Dr. Paltoo explains. Policy Requirements, Expectations NIH expects funding applicants to include a GDS plan in their proposals, but NIH officials say that will not factor into the overall impact score for the project unless otherwise specified in NIH's funding- opportunity announcement. Proposals should also include costs of data sharing in their estimated budgets. I fear that as we keep asking informed consent to do more and more work in the name of protecting participants, we are actually diluting its power to do so. —Misha Angrist, PhD NIH also expects researchers to gain consent from study participants for broad sharing of data and inform them that data may be used in future research. The same consent is also expected for clinical specimens and cell lines even if they have been de-identified, says Dr. Paltoo. Researchers must ensure that their institutional review boards have approved sharing data after considering security risks to subjects and families. If study subjects haven't consented to broad sharing, researchers must tell NIH how their data may be appropriately used. Researchers are being encouraged to responsibly share genomic data obtained from large-scale studies, and obtain informed consent when sharing results from studies on humans. During the process of informed consent, researchers should also discuss whether participants' individual-level data would be shared through unrestricted- or controlled-access repositories, the policy notes. This requirement comes after a high-profile court case involving the Havasupai Native American tribe of Arizona. The tribe won a settlement against Arizona State University when it asserted university researchers used blood samples that were originally provided for a study on diabetes to conduct research on mental illness without the tribe's permission. Also, researchers at the Whitehead Institute in Cambridge, Massachusetts have discovered the identities of genetic research study participants by cross- referencing their de-identified data from a public, unrestricted NIH database with another public database containing addresses, phone numbers, social- networking profiles, and public records [Gymrek et al., 2013]. Reaction The new NIH policy establishes that informed consent should be consistent with use of research subjects' information, says Jeffrey Botkin, MD, Professor of Pediatrics, Chief of the Division of Medical Ethics and Humanities, and Associate Vice President for Research Integrity at the University of Utah in Salt Lake City. “But there's a broad concern regarding whether informed consent is the right model,” he adds, noting that study participants usually aren't given choices about how their data are used. “Of course, if you want to do something with someone's blood, tissue, DNA, or data, then you should ask for [his or] her permission first,” says Misha Angrist, PhD, Associate Professor and Senior Fellow in Science and Society at Duke University in Durham, North Carolina. But adding language about wider data sharing into forms that are already long, legalistic, and difficult to understand may do little to empower research participants and ensure that their consent is truly informed, he emphasizes. “I fear that as we keep asking informed consent to do more and more work in the name of protecting participants, we are actually diluting its power to do so,” Dr. Angrist says. Reference Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. 2013. Identifying personal genomes by surname inference. Science 339 6117 321– 324. CrossrefCASPubMedWeb of Science®Google Scholar Citing Literature Volume167, Issue1January 2015Pages viii-ix ReferencesRelatedInformation" @default.
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• W4240936705 title "NIH policy supports broader sharing of genomic data, strengthens informed-consent rules" @default.
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