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PLOS Genetics  2016 

Consent Codes: Upholding Standard Data Use Conditions

DOI: 10.1371/journal.pgen.1005772

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Abstract:

Author Summary A systematic way of recording data use conditions that are based on consent permissions as found in the datasets of the main public genome archives (NCBI dbGaP and EMBL-EBI/CRG EGA).

References

[1]  The Global Alliance for Genomics and Health. .
[2]  Knoppers BM (2014) Framework for responsible sharing of genomic and health-related data. The HUGO Journal 8(1): 3. doi: 10.1186/s11568-014-0003-1
[3]  The Beacon Project, Global Alliance for Genomics and Health. .
[4]  Legacy Consents and International Data Sharing. Prepared for GA4GH by P3G—IPAC. .
[5]  Tasse A-M (2013) From ICH to IBH in Biobanking? A Legal Perspective on Harmonization, Standardisation and Unification. Studies in Ethics, Law, and Technology 7(1). doi: 10.1515/1941-6008.1180.
[6]  Budin-Ljosne I, Tasse AM, Knoppers BM, Harris JR (2011) Bridging consent: from toll bridges to lift bridges? BMC Med Genomics 4: 69. doi: 10.1186/1755-8794-4-69. pmid:21970509
[7]  NIH Standard Data Use Limitations. .
[8]  Gefenas E, Dranseika V, Serepkaite J, Cekanauskaite A, Caenazzo L, Gordijn B, et al. (2012) Turning residual human biological materials into research collections: playing with consent. J Med Ethics 38: 351–355. doi: 10.1136/medethics-2011-100113. pmid:22408238
[9]  Bovenberg JA, Knoppers BM, Hansell A, de Hoogh K (2015) Exposing participants? Population biobanks go geo. Eur J Hum Genet. doi: 10.1038/ejhg.2015.43.
[10]  Philippakis AA, Azzariti DR, Beltran S, Brookes AJ, Brownstein CA, Brudno M, et al. (2015) The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery. Hum Mutat 36: 915–921. doi: 10.1002/humu.22858. pmid:26295439
[11]  Ramos EM, Din-Lovinescu C, Bookman EB, McNeil LJ, Baker CC, Godynskiy G, et al. (2013) A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee. Am J Hum Genet 92: 479–488. doi: 10.1016/j.ajhg.2012.08.034. pmid:23561843
[12]  Ogrinc G, Nelson WA, Adams SM, O'Hara AE (2013) An instrument to differentiate between clinical research and quality improvement. IRB 35: 1–8.
[13]  Eilbeck K, Lewis SE, Mungall CJ, Yandell M, Stein L, Durbin R, et al. (2005) The Sequence Ontology: a tool for the unification of genome annotations. Genome Biol 6: R44. pmid:15892872 doi: 10.1186/gb-2005-6-5-r44
[14]  Mungall CJ, Batchelor C, Eilbeck K (2011) Evolution of the Sequence Ontology terms and relationships. J Biomed Inform 44: 87–93. doi: 10.1016/j.jbi.2010.03.002. pmid:20226267
[15]  Schriml LM, Arze C, Nadendla S, Chang YW, Mazaitis M, Felix V, et al. (2012) Disease Ontology: a backbone for disease semantic integration. Nucleic Acids Res 40: D940–946. doi: 10.1093/nar/gkr972. pmid:22080554
[16]  Vasant D, Chanas L, Malone J, Hanauer M, Olry A, Jupp S, et al. ORDO: An Ontology Connecting Rare Disease, Epidemiology and Genetic Data. Proceedings of ISMB 2014 (Phenotype Day).
[17]  Kohler S, Doelken SC, Mungall CJ, Bauer S, Firth HV, Bailleul-Forestier I, et al. (2014) The Human Phenotype Ontology project: linking molecular biology and disease through phenotype data. Nucleic Acids Res 42: D966–974. doi: 10.1093/nar/gkt1026. pmid:24217912
[18]  Data FAIRport. .
[19]  Sansone SA, Rocca-Serra P, Field D, Maguire E, Taylor C, Hofmann O, et al. (2012) Toward interoperable bioscience data. Nat Genet 44: 121–126. doi: 10.1038/ng.1054. pmid:22281772
[20]  Hettne KM, Dharuri H, Zhao J, Wolstencroft K, Belhajjame K, Soiland-Reyes S, et al. (2014) Structuring research methods and data with the research object model: genomics workflows as a case study. J Biomed Semantics 5: 41. doi: 10.1186/2041-1480-5-41. pmid:25276335
[21]  . .
[22]  Mons B, van Haagen H, Chichester C, Hoen PB, den Dunnen JT, van Ommen G, et al. (2011) The value of data. Nat Genet 43: 281–283. doi: 10.1038/ng0411-281. pmid:21445068
[23]  Federal Policy for the Protection of Human Subjects, Federal Register / Vol. 80, No. 173 / Tuesday, September 8, 2015 / Proposed Rule 45 CFR Part 46.
[24]  National Institutes of Health US (2014) NIH Genomic Data Sharing Policy (NOT-OD-14-124).
[25]  The European Genome-phenome Archive. ; .
[26]  The Database of Genotypes and Phenotypes. .
[27]  Institutional Certification documents, NIH Genomic Data Sharing webpage. .
[28]  Paltoo DN, Rodriguez LL, Feolo M, Gillanders E, Ramos EM, Rutter JL, et al. (2014) Data use under the NIH GWAS data sharing policy and future directions. Nat Genet 46: 934–938. doi: 10.1038/ng.3062. pmid:25162809
[29]  Lappalainen I, Almeida-King J, Kumanduri V, Senf A, Spalding JD, Ur-Rehman S, et al. (2015) The European Genome-phenome Archive of human data consented for biomedical research. Nat Genet 47: 692–695. doi: 10.1038/ng.3312. pmid:26111507
[30]  Global Alliance for Genomics and Health Data Working Group. .
[31]  Matchmaker Exchange. .
[32]  International Rare Disease Research Consortium (IRDiRC). .
[33]  Rehm HL, Berg JS, Brooks LD, Bustamante CD, Evans JP, Landrum MJ, et al. (2015) ClinGen—the Clinical Genome Resource. N Engl J Med 372: 2235–2242. doi: 10.1056/NEJMsr1406261. pmid:26014595

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