{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T04:37:34Z","timestamp":1768279054829,"version":"3.49.0"},"reference-count":28,"publisher":"Public Library of Science (PLoS)","issue":"7","license":[{"start":{"date-parts":[[2012,7,12]],"date-time":"2012-07-12T00:00:00Z","timestamp":1342051200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.ploscompbiol.org"],"crossmark-restriction":false},"short-container-title":["PLoS Comput Biol"],"DOI":"10.1371\/journal.pcbi.1002549","type":"journal-article","created":{"date-parts":[[2012,7,13]],"date-time":"2012-07-13T16:22:31Z","timestamp":1342196551000},"page":"e1002549","update-policy":"https:\/\/doi.org\/10.1371\/journal.pcbi.corrections_policy","source":"Crossref","is-referenced-by-count":97,"title":["Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)"],"prefix":"10.1371","volume":"8","author":[{"given":"Yann","family":"Joly","sequence":"first","affiliation":[]},{"given":"Edward S.","family":"Dove","sequence":"additional","affiliation":[]},{"given":"Bartha M.","family":"Knoppers","sequence":"additional","affiliation":[]},{"given":"Martin","family":"Bobrow","sequence":"additional","affiliation":[]},{"given":"Don","family":"Chalmers","sequence":"additional","affiliation":[]}],"member":"340","published-online":{"date-parts":[[2012,7,12]]},"reference":[{"key":"ref1","doi-asserted-by":"crossref","first-page":"168","DOI":"10.1038\/461168a","article-title":"Prepublication data sharing.","volume":"461","author":"E Birney","year":"2009","journal-title":"Nature"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"537","DOI":"10.1016\/S0140-6736(10)62234-9","article-title":"Sharing research data to improve public health.","volume":"377","author":"M Walport","year":"2011","journal-title":"Lancet"},{"key":"ref3","article-title":"Sharing data from large-scale biological research projects: A system of tripartite responsibility.","year":"2003"},{"key":"ref4","article-title":"Joint statement by President Clinton and Prime Minister Tony Blair of the U.K.","year":"2000"},{"key":"ref5","doi-asserted-by":"crossref","first-page":"623","DOI":"10.1089\/blr.2010.9909","article-title":"The challenges of achieving open-source sharing of biobank data.","volume":"29","author":"DM Gitter","year":"2010","journal-title":"Biotechnology Law Report"},{"key":"ref6","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1186\/gm276","article-title":"Developing and implementing an institute-wide data sharing policy.","volume":"3","author":"SO Dyke","year":"2011","journal-title":"Genome Med"},{"key":"ref7","doi-asserted-by":"crossref","first-page":"e21101","DOI":"10.1371\/journal.pone.0021101","article-title":"Data sharing by scientists: practices and perceptions.","volume":"6","author":"C Tenopir","year":"2011","journal-title":"PLoS ONE"},{"key":"ref8","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1007\/s00439-011-1044-3","article-title":"Genomic databases access agreements: legal validity and possible sanctions.","volume":"130","author":"Y Joly","year":"2011","journal-title":"Hum Genet"},{"key":"ref9","doi-asserted-by":"crossref","first-page":"104","DOI":"10.1159\/000309852","article-title":"\u2018Access arrangements\u2019 for biobanks: a fine line between facilitating and hindering collaboration.","volume":"14","author":"S Fortin","year":"2011","journal-title":"Public Health Genomics"},{"key":"ref10","doi-asserted-by":"crossref","first-page":"633","DOI":"10.1038\/nrg2124","article-title":"Share and share alike.","volume":"8","author":"MW Foster","year":"2007","journal-title":"Nature Rev Genet"},{"key":"ref11","doi-asserted-by":"crossref","first-page":"e1002278","DOI":"10.1371\/journal.pcbi.1002278","article-title":"Genomics and privacy: implications of the new reality of closed data for the field.","volume":"7","author":"D Greenbaum","year":"2011","journal-title":"PLoS Comput Biol"},{"key":"ref12","doi-asserted-by":"crossref","first-page":"e1000143","DOI":"10.1371\/journal.pmed.1000143","article-title":"Ethical data release in genome-wide association studies in developing countries.","volume":"6","author":"M Parker","year":"2009","journal-title":"PLoS Med"},{"key":"ref13","first-page":"476","article-title":"The application of data access policies designed for genome-wide association studies to smaller scale databases.","volume":"10","author":"DM Gitter","year":"2011","journal-title":"J Marshall Rev of Intell Prop L"},{"key":"ref14","doi-asserted-by":"crossref","first-page":"1486","DOI":"10.1126\/science.325_1486a","article-title":"Paper retracted following genome data breach.","volume":"325","author":"C Holden","year":"2009","journal-title":"Science"},{"key":"ref15","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1038\/455013a","article-title":"DNA databases shut after identities compromised.","volume":"455","year":"2008","journal-title":"Nature"},{"key":"ref16","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1126\/science.1095019","article-title":"Genomic research and human subject privacy.","volume":"305","author":"Z Lin","year":"2004","journal-title":"Science"},{"key":"ref17","doi-asserted-by":"crossref","first-page":"e1000167","DOI":"10.1371\/journal.pgen.1000167","article-title":"Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.","volume":"4","author":"N Homer","year":"2008","journal-title":"PLoS Genet"},{"key":"ref18","doi-asserted-by":"crossref","first-page":"e73","DOI":"10.1371\/journal.pbio.0060073","article-title":"Research ethics recommendations for whole-genome research: consensus statement.","volume":"6","author":"T Caulfield","year":"2008","journal-title":"PLoS Biol"},{"key":"ref19","article-title":"Goals, structure, policies &amp; guidelines.","year":"2008"},{"key":"ref20","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1080\/09615768.2007.11427678","article-title":"Genomic databases and international collaboration.","volume":"18","author":"BM Knoppers","year":"2007","journal-title":"King's Law Journal"},{"key":"ref21","doi-asserted-by":"crossref","first-page":"591","DOI":"10.1016\/j.ajhg.2012.02.008","article-title":"On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy.","volume":"90","author":"HK Im","year":"2012","journal-title":"Am J Hum Genet"},{"key":"ref22","doi-asserted-by":"crossref","first-page":"603","DOI":"10.1038\/ng.2248","article-title":"Bayesian method to predict individual SNP genotypes from gene expression data.","volume":"44","author":"EE Schadt","year":"2012","journal-title":"Nat Genet"},{"key":"ref23","doi-asserted-by":"crossref","first-page":"286","DOI":"10.1136\/bmj.329.7460.286","article-title":"Research ethics paperwork: what is the plot we seem to have lost?","volume":"329","author":"K Jamrozik","year":"2004","journal-title":"BMJ"},{"key":"ref24","doi-asserted-by":"crossref","first-page":"a1732","DOI":"10.1136\/bmj.a1732","article-title":"Regulation \u2013 the real threat to clinical research.","volume":"337","author":"PM Stewart","year":"2008","journal-title":"BMJ"},{"key":"ref25","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1258\/ce.2008.008014","article-title":"Ethics and research governance: the views of researchers, health-care professionals and other stakeholders.","volume":"3","author":"N Hallowell","year":"2008","journal-title":"Clin Ethics"},{"key":"ref26","doi-asserted-by":"crossref","first-page":"599","DOI":"10.1111\/j.1468-0009.2011.00644.x","article-title":"Burdens on research imposed by institutional review boards: the state of the evidence and its implications for regulatory reform.","volume":"89","author":"G Silberman","year":"2011","journal-title":"Milbank Q"},{"key":"ref27","doi-asserted-by":"crossref","first-page":"948","DOI":"10.1097\/GIM.0b013e3182227589","article-title":"To share or not to share: a randomized trial of consent for data sharing in genome research.","volume":"13","author":"AL McGuire","year":"2011","journal-title":"Genet Med"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1159\/000334718","article-title":"Balancing the risks and benefits of genomic data sharing: genome research participants&apos; perspectives.","volume":"15","author":"JM Oliver","year":"2012","journal-title":"Public Health Genomics"}],"container-title":["PLoS Computational Biology"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/dx.plos.org\/10.1371\/journal.pcbi.1002549","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,5,9]],"date-time":"2020-05-09T02:39:00Z","timestamp":1588991940000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pcbi.1002549"}},"subtitle":[],"editor":[{"given":"Philip E.","family":"Bourne","sequence":"first","affiliation":[]}],"short-title":[],"issued":{"date-parts":[[2012,7,12]]},"references-count":28,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2012,7,12]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pcbi.1002549","relation":{},"ISSN":["1553-7358"],"issn-type":[{"value":"1553-7358","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,7,12]]}}}