Evolving data access policy: The Canadian context
作者： Stephanie O.M. Dyke , Katie M. Saulnier , Tomi Pastinen , Guillaume Bourque , Yann Joly
关键词: Freedom of information 、 Public relations 、 Incentive 、 Data access 、 Context (language use) 、 Policy analysis 、 Political science 、 Data sharing
摘要: In setting up a data access policy to share controlled from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely be relevant other researchers sharing data, especially Canadian projects. We discuss our solutions following data-sharing challenges, based on comparative analysis: (1) providing growing number of researchers; (2) maintaining privacy standards while internationally; (3) freedom information requests; (4) more incentives for pre-publication data.
openum.ca
sci-hub.st 参考文章(14)
, Prepublication data sharing Nature. ,vol. 461, pp. 168- 170 ,(2009) , 10.1038/461168A
Stephanie O. M. Dyke, Warren A. Cheung, Yann Joly, Ole Ammerpohl, Pavlo Lutsik, Mark A. Rothstein, Maxime Caron, Stephan Busche, Guillaume Bourque, Lars Rönnblom, Paul Flicek, Stephan Beck, Martin Hirst, Henk Stunnenberg, Reiner Siebert, Jörn Walter, Tomi Pastinen, Epigenome data release: a participant-centered approach to privacy protection Genome Biology. ,vol. 16, pp. 142- 142 ,(2015) , 10.1186/S13059-015-0723-0
BRIF workshop group Cambon-Thomsen Anne 1 2 Thorisson Gudmundur A 3 Named collaborators, Sandrine Andrieu, Gabrielle Bertier, Martin Boeckhout, Anne Cambon-Thomsen, Jane Carpenter, Georges Dagher, Raymond Dalgleish, Mylène Deschênes, Jeanne Hélène di Donato, Mirella Filocamo, Marcel Goldberg, Robert Hewitt, Paul Hofman, Francine Kauffmann, Liis Leitsalu, Irene Lomba, Laurence Mabile, Bela Melegh, Andres Metspalu, Lisa Miranda, Federica Napolitani, Mikkel Z Oestergaard, Barbara Parodi, Markus Pasterk, Acacia Reiche, Emmanuelle Rial-Sebbag, Guillaume Rivalle, Philippe Rochaix, Guillaume Susbielle, Linda Tarasova, Mogens Thomsen, Gudmundur A Thorisson, Ma'n H Zawati, Marie Zins, Laurence Mabile, The role of a bioresource research impact factor as an incentive to share human bioresources. Nature Genetics. ,vol. 43, pp. 503- 504 ,(2011) , 10.1038/NG.831
Djims Milius, Edward S Dove, Donald Chalmers, Stephanie O M Dyke, Kazuto Kato, Pilar Nicolás, BF Francis Ouellette, Brad Ozenberger, Laura L Rodriguez, Nikolajs Zeps, Yann Joly, The International Cancer Genome Consortium's evolving data-protection policies. Nature Biotechnology. ,vol. 32, pp. 519- 523 ,(2014) , 10.1038/NBT.2926
Elena Bravo, Alessia Calzolari, Paola De Castro, Laurence Mabile, Federica Napolitani, Anna Maria Rossi, Anne Cambon-Thomsen, Developing a guideline to standardize the citation of bioresources in journal articles (CoBRA) BMC Medicine. ,vol. 13, pp. 33- 33 ,(2015) , 10.1186/S12916-015-0266-Y
Erin M. Ramos, Corina Din-Lovinescu, Ebony B. Bookman, Lisa J. McNeil, Carl C. Baker, Georgy Godynskiy, Emily L. Harris, Thomas Lehner, Catherine McKeon, Joel Moss, Vaurice L. Starks, Stephen T. Sherry, Teri A. Manolio, Laura Lyman Rodriguez, A Mechanism for Controlled Access to GWAS Data: Experience of the GAIN Data Access Committee American Journal of Human Genetics. ,vol. 92, pp. 479- 488 ,(2013) , 10.1016/J.AJHG.2012.08.034
Yann Joly, Nik Zeps, Bartha M Knoppers, None, Genomic databases access agreements: legal validity and possible sanctions Human Genetics. ,vol. 130, pp. 441- 449 ,(2011) , 10.1007/S00439-011-1044-3
Carol Tenopir, Suzie Allard, Kimberly Douglass, Arsev Umur Aydinoglu, Lei Wu, Eleanor Read, Maribeth Manoff, Mike Frame, Data Sharing by Scientists: Practices and Perceptions PLOS ONE. ,vol. 6, pp. 1- 21 ,(2011) , 10.1371/JOURNAL.PONE.0021101
Eric G. Campbell, Brian R. Clarridge, Manjusha Gokhale, Lauren Birenbaum, Stephen Hilgartner, Neil A. Holtzman, David Blumenthal, Data withholding in academic genetics: evidence from a national survey. JAMA. ,vol. 287, pp. 473- 480 ,(2002) , 10.1001/JAMA.287.4.473
Bartha Maria Knoppers, Rex L Chisholm, Jane Kaye, David Cox, Adrian Thorogood, Paul Burton, Anthony J Brookes, Isabel Fortier, Pat Goodwin, Jennifer R Harris, Kristian Hveem, Alistair Kent, Julian Little, Peter H J Riegman, Samuli Ripatti, Ronald P Stolk, A P3G generic access agreement for population genomic studies Nature Biotechnology. ,vol. 31, pp. 384- 385 ,(2013) , 10.1038/NBT.2567