Evolving data access policy: The Canadian context

被引：11

作者：

Dyke, Stephanie O. M. ^{[1
]}

Saulnier, Katie M. ^{[1
]}

Pastinen, Tomi ^{[2
]}

Bourque, Guillaume ^{[2
]}

Joly, Yann ^{[1
]}

机构：

[1] McGill Univ, Fac Med, Ctr Genom & Policy, Dept Human Genet, Montreal, PQ H3A 0G1, Canada

[2] McGill Univ, Epigen Mapping Ctr, Fac Med, Dept Human Genet, Montreal, PQ H3A 0G1, Canada

来源：

FACETS | 2016年 / 1卷

基金：

加拿大健康研究院;

关键词：

data sharing; data access; ethics; privacy; consent; controlled access;

D O I：

10.1139/facets-2016-0002

中图分类号：

O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];

学科分类号：

07 ; 0710 ; 09 ;

摘要：

In setting up a data access policy to share controlled access data from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely to be relevant to other researchers sharing data, especially from Canadian projects. We discuss our solutions to the following data-sharing challenges, based on comparative legal and policy analysis: (1) providing access to data to a growing number of researchers; (2) maintaining Canadian privacy standards while sharing controlled access data internationally; (3) freedom of information requests; and (4) providing more incentives for researchers to share pre-publication data.

引用

页码：138 / 147

页数：10

共 27 条

[1] Developing a guideline to standardize the citation of bioresources in journal articles (CoBRA) [J].

Bravo, Elena ;

Calzolari, Alessia ;

De Castro, Paola ;

Mabile, Laurence ;

Napolitani, Federica ;

Rossi, Anna Maria ;

Cambon-Thomsen, Anne .

BMC MEDICINE, 2015, 13

[2]

Brown SM., 2012, GOVERNING LAW CLAUSE

[3] The role of a bioresource research impact factor as an incentive to share human bioresources [J].

Cambon-Thomsen, Anne ;

Thorisson, Gudmundur A. ;

Mabile, Laurence .

NATURE GENETICS, 2011, 43 (06) :503-504

[4] Data withholding in academic genetics - Evidence from a national survey [J].

Campbell, EG ;

Clarridge, BR ;

Gokhale, NN ;

Birenbaum, L ;

Hilgartner, S ;

Holtzman, NA ;

Blumenthal, D .

JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2002, 287 (04) :473-480

[5]

Canadian Institutes of Health Research (CIHR) Natural Sciences and Engineering Research Council of Canada (NSERC) & Social Sciences and Humanities Research Council of Canada (SSHRC), 2014, TRIC POL STAT ETH CO

[6] Epigenome data release: a participant-centered approach to privacy protection [J].

Dyke, Stephanie O. M. ;

Cheung, Warren A. ;

Joly, Yann ;

Ammerpohl, Ole ;

Lutsik, Pavlo ;

Rothstein, Mark A. ;

Caron, Maxime ;

Busche, Stephan ;

Bourque, Guillaume ;

Ronnblom, Lars ;

Flicek, Paul ;

Beck, Stephan ;

Hirst, Martin ;

Stunnenberg, Henk ;

Siebert, Reiner ;

Walter, Joern ;

Pastinen, Tomi .

GENOME BIOLOGY, 2015, 16

[7] Developing and implementing an institute-wide data sharing policy [J].

Dyke, Stephanie O. M. ;

Hubbard, Tim J. P. .

GENOME MEDICINE, 2011, 3

[8]

European Medicines Agency, 2014, EMA2408102013

[9]

International Human Epigenome Consortium (IHEC), 2013, IHEC GOALS STRUCT PO

[10] Genomic databases access agreements: legal validity and possible sanctions [J].

Joly, Yann ;

Zeps, Nik ;

Knoppers, Bartha M. .

HUMAN GENETICS, 2011, 130 (03) :441-449

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