Building a data sharing model for global genomic research

作者: Patricia Kosseim , Edward S Dove , Carman Baggaley , Eric M Meslin , Fred H Cate

DOI: 10.1186/S13059-014-0430-2

关键词:

摘要: Data sharing models designed to facilitate global business provide insights for improving transborder genomic data sharing. We argue that a flexible, externally endorsed, multilateral arrangement, combined with an objective third-party assurance mechanism, can effectively balance privacy the need share globally.

参考文章(19)
Eric M Meslin, C D'arcy J Holman, Fiona Stanley, Judy Allen, Privacy protectionism and health information: Is there any redress for harms to health? Journal of law and medicine. ,vol. 21, pp. 473- 485 ,(2013)
Eric M. Meslin, James V. Lavery, Michael McDonald, Research ethics across the 49th parallel: the potential value of pilot testing "equivalent protections" in Canadian research institutions. Health law review. ,vol. 13, pp. 86- 96 ,(2005)
Christopher Barth Kuner, Transborder Data Flows and Data Privacy Law ,(2013)
N. Hoppe, A. Kent, C. Adebamowo, P. Marshall, K. Kato, J. Kaye, E. M. Meslin, B. M. Knoppers, E. T. Juengst, M. Deschenes, A. Cambon-Thomsen, D. Chalmers, J. De Vries, K. Edwards, ELSI 2.0 for Genomics and Society Science. ,vol. 336, pp. 673- 674 ,(2012) , 10.1126/SCIENCE.1218015
Eric M. Meslin, Mildred K. Cho, Research ethics in the era of personalized medicine: updating science's contract with society. Public Health Genomics. ,vol. 13, pp. 378- 384 ,(2010) , 10.1159/000319473
Flora Colledge, Bernice Elger, Heidi C. Howard, A review of the barriers to sharing in biobanking. Biopreservation and Biobanking. ,vol. 11, pp. 339- 346 ,(2013) , 10.1089/BIO.2013.0039
Isabelle Budin-Ljøsne, , Julia Isaeva, Bartha Maria Knoppers, Anne Marie Tassé, Huei-yi Shen, Mark I McCarthy, Jennifer R Harris, Data sharing in large research consortia: experiences and recommendations from ENGAGE. European Journal of Human Genetics. ,vol. 22, pp. 317- 321 ,(2014) , 10.1038/EJHG.2013.131
Michelle M. Mello, Jeffrey K. Francer, Marc Wilenzick, Patricia Teden, Barbara E. Bierer, Mark Barnes, Preparing for Responsible Sharing of Clinical Trial Data The New England Journal of Medicine. ,vol. 369, pp. 1651- 1658 ,(2013) , 10.1056/NEJMHLE1309073