{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,4,16]],"date-time":"2025-04-16T02:48:53Z","timestamp":1744771733101},"reference-count":18,"publisher":"Springer Science and Business Media LLC","issue":"5","license":[{"start":{"date-parts":[[2019,3,12]],"date-time":"2019-03-12T00:00:00Z","timestamp":1552348800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"funder":[{"name":"ATIGE"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Sci Eng Ethics"],"published-print":{"date-parts":[[2019,10]]},"DOI":"10.1007\/s11948-019-00085-4","type":"journal-article","created":{"date-parts":[[2019,3,12]],"date-time":"2019-03-12T16:20:21Z","timestamp":1552407621000},"page":"1597-1602","update-policy":"http:\/\/dx.doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France"],"prefix":"10.1007","volume":"25","author":[{"given":"Henri-Corto","family":"Stoekl\u00e9","sequence":"first","affiliation":[]},{"given":"Mauro","family":"Turrini","sequence":"additional","affiliation":[]},{"given":"Philipe","family":"Charlier","sequence":"additional","affiliation":[]},{"given":"Jean-Fran\u00e7ois","family":"Deleuze","sequence":"additional","affiliation":[]},{"given":"Christian","family":"Herv\u00e9","sequence":"additional","affiliation":[]},{"given":"Guillaume","family":"Vogt","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2019,3,12]]},"reference":[{"key":"85_CR1","unstructured":"AVIESAN. (2016). Plan France M\u00e9decine G\u00e9nomique 2025 [France Genomic Medicine Plan 2025]."},{"issue":"Suppl 2","key":"85_CR2","doi-asserted-by":"publisher","first-page":"S88","DOI":"10.1038\/sj.ejhg.5201114","volume":"11","author":"B Godard","year":"2003","unstructured":"Godard, B., Schmidtke, J., Cassiman, J. J., & Ayme, S. (2003). Data storage and DNA banking for biomedical research: Informed consent, confidentiality, quality issues, ownership, return of benefits A professional perspective. European Journal of Human Genetics,\n                           11(Suppl 2), S88\u2013S122. \n                    https:\/\/doi.org\/10.1038\/sj.ejhg.5201114\n                    \n                  .","journal-title":"European Journal of Human Genetics"},{"key":"85_CR3","unstructured":"Godart, B. (2009). Genomics seen by researchers and leaders from different ethno-cultural communities: Limits on scientific advances in science? In Human, humanity and scientific progress (pp. 35\u201343). Paris: Dalloz."},{"issue":"9","key":"85_CR4","doi-asserted-by":"publisher","first-page":"34","DOI":"10.1080\/15265161.2015.1062162","volume":"15","author":"C Grady","year":"2015","unstructured":"Grady, C., Eckstein, L., Berkman, B., Brock, D., Cook-Deegan, R., Fullerton, S. M., et al. (2015). Broad consent for research with biological samples: Workshop conclusions. American Journal of Bioethics,\n                           15(9), 34\u201342. \n                    https:\/\/doi.org\/10.1080\/15265161.2015.1062162\n                    \n                  .","journal-title":"American Journal of Bioethics"},{"key":"85_CR5","doi-asserted-by":"publisher","first-page":"174","DOI":"10.1038\/550174a","volume":"550","author":"EC Hayden","year":"2017","unstructured":"Hayden, E. C. (2017). The rise and fall and rise again of 23andMe. Nature,\n                           550, 174\u2013177. \n                    https:\/\/doi.org\/10.1038\/550174a\n                    \n                  .","journal-title":"Nature"},{"key":"85_CR6","unstructured":"Herv\u00e9, C., Stoekle, H. C., & Vogt, G. (2016).\u2009\u00abUn march\u00e9 aux donn\u00e9es g\u00e9n\u00e9tiques\u2009\u00bb\u2009qui interroge [\u201cA genetic data market\u201d that questions]. Le Monde."},{"key":"85_CR7","doi-asserted-by":"publisher","DOI":"10.3390\/jpm6010002","author":"EW Karlson","year":"2016","unstructured":"Karlson, E. W., Boutin, N. T., Hoffnagle, A. G., & Allen, N. L. (2016). Building the partners healthcare biobank at partners personalized medicine: Informed consent, return of research results, recruitment lessons and operational considerations. Journal of Personalized Medicine. \n                    https:\/\/doi.org\/10.3390\/jpm6010002\n                    \n                  .","journal-title":"Journal of Personalized Medicine"},{"issue":"2","key":"85_CR8","doi-asserted-by":"publisher","first-page":"141","DOI":"10.1038\/ejhg.2014.71","volume":"23","author":"J Kaye","year":"2015","unstructured":"Kaye, J., Whitley, E. A., Lund, D., Morrison, M., Teare, H., & Melham, K. (2015). Dynamic consent: A patient interface for twenty-first century research networks. European Journal of Human Genetics,\n                           23(2), 141\u2013146. \n                    https:\/\/doi.org\/10.1038\/ejhg.2014.71\n                    \n                  .","journal-title":"European Journal of Human Genetics"},{"issue":"6","key":"85_CR9","doi-asserted-by":"publisher","first-page":"571","DOI":"10.1016\/j.arcped.2017.03.012","volume":"24","author":"C Levy","year":"2017","unstructured":"Levy, C., Rybak, A., Cohen, R., & Jung, C. (2017). The Jarde law, a real simplification of research in France? Archives de Pediatrie,\n                           24(6), 571\u2013577. \n                    https:\/\/doi.org\/10.1016\/j.arcped.2017.03.012\n                    \n                  .","journal-title":"Archives de Pediatrie"},{"issue":"1","key":"85_CR10","doi-asserted-by":"publisher","first-page":"51","DOI":"10.1186\/s12910-017-0209-6","volume":"18","author":"T Ploug","year":"2017","unstructured":"Ploug, T., & Holm, S. (2017). Eliciting meta consent for future secondary research use of health data using a smartphone application\u2014A proof of concept study in the Danish population. BMC Medical Ethics,\n                           18(1), 51. \n                    https:\/\/doi.org\/10.1186\/s12910-017-0209-6\n                    \n                  .","journal-title":"BMC Medical Ethics"},{"issue":"4","key":"85_CR11","doi-asserted-by":"publisher","first-page":"990","DOI":"10.1162\/154247603322493212","volume":"1","author":"JC Rochet","year":"2003","unstructured":"Rochet, J. C., & Tirole, J. (2003). Platform competition in two-sided markets. Journal of the European Economic Association,\n                           1(4), 990\u20131029.","journal-title":"Journal of the European Economic Association"},{"issue":"9","key":"85_CR12","doi-asserted-by":"publisher","first-page":"897","DOI":"10.1038\/ejhg.2012.282","volume":"21","author":"KS Steinsbekk","year":"2013","unstructured":"Steinsbekk, K. S., Kare Myskja, B., & Solberg, B. (2013). Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics,\n                           21(9), 897\u2013902. \n                    https:\/\/doi.org\/10.1038\/ejhg.2012.282\n                    \n                  .","journal-title":"European Journal of Human Genetics"},{"key":"85_CR13","unstructured":"Stoekle, H. C. (2017). M\u00e9decine personnalis\u00e9 et bio\u00e9thique: Enjeux \u00e9thiques dans l\u2019\u00e9change et le partage des donn\u00e9es g\u00e9n\u00e9tiques [personalized medicine and bioethics: Ethical issues in the exchange and sharing of genetic data] L\u2019Harmattan."},{"issue":"2","key":"85_CR14","doi-asserted-by":"publisher","first-page":"188","DOI":"10.1051\/medsci\/20173302015","volume":"33","author":"HC Stoekle","year":"2017","unstructured":"Stoekle, H. C., Deleuze, J. F., Vogt, G., & Herve, C. (2017a). Toward dynamic informed consent. Me\u0301decine Sciences (Paris),\n                           33(2), 188\u2013192. \n                    https:\/\/doi.org\/10.1051\/medsci\/20173302015\n                    \n                  .","journal-title":"Me\u0301decine Sciences (Paris)"},{"issue":"8\u20139","key":"85_CR15","doi-asserted-by":"publisher","first-page":"735","DOI":"10.1051\/medsci\/20183408022","volume":"34","author":"HC Stoekle","year":"2018","unstructured":"Stoekle, H. C., Forster, N., Charlier, P., Bloch, O. C., Herve, C., Turrini, M., et al. (2018). Genetic data sharing: A new type of capital. Me\u0301decine Sciences (Paris),\n                           34(8\u20139), 735\u2013739. \n                    https:\/\/doi.org\/10.1051\/medsci\/20183408022\n                    \n                  .","journal-title":"Me\u0301decine Sciences (Paris)"},{"key":"85_CR16","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1007\/s11948-017-9880-8","volume":"1","author":"HC Stoekle","year":"2017","unstructured":"Stoekle, H. C., Mamzer-Bruneel, M. F., Frouart, C. H., Le Tourneau, C., Laurent-Puig, P., Vogt, G., et al. (2017b). Molecular tumor boards: Ethical issues in the new era of data medicine. Science and Engineering Ethics,\n                           1, 1. \n                    https:\/\/doi.org\/10.1007\/s11948-017-9880-8\n                    \n                  .","journal-title":"Science and Engineering Ethics"},{"key":"85_CR17","doi-asserted-by":"publisher","first-page":"19","DOI":"10.1186\/s12910-016-0101-9","volume":"17","author":"HC Stoekle","year":"2016","unstructured":"Stoekle, H. C., Mamzer-Bruneel, M. F., Vogt, G., & Herve, C. (2016). 23andMe: A new two-sided data-banking market model. BMC Medical Ethics,\n                           17, 19. \n                    https:\/\/doi.org\/10.1186\/s12910-016-0101-9\n                    \n                  .","journal-title":"BMC Medical Ethics"},{"key":"85_CR18","unstructured":"Villani, C. (2018). Donner un sens \u00e0 l\u2019intelligence artificielle: Pour une strat\u00e9gie nationale et europ\u00e9enne [Giving meaning to artificial intelligence: For a national and European strategy]."}],"container-title":["Science and Engineering Ethics"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11948-019-00085-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s11948-019-00085-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11948-019-00085-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,3,11]],"date-time":"2020-03-11T00:16:10Z","timestamp":1583885770000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s11948-019-00085-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,3,12]]},"references-count":18,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2019,10]]}},"alternative-id":["85"],"URL":"https:\/\/doi.org\/10.1007\/s11948-019-00085-4","relation":{},"ISSN":["1353-3452","1471-5546"],"issn-type":[{"value":"1353-3452","type":"print"},{"value":"1471-5546","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,3,12]]},"assertion":[{"value":"22 January 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"16 January 2019","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 March 2019","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}}]}}