-
2
-
-
73449112365
-
Public access to genome-wide data: Five views on balancing research with privacy and protection
-
G. Church, C. Heeney, N. Hawkins, J. de Vries, P. Boddington, J. Kaye, M. Bobrow and B. Weir, 'Public Access to Genome-wide Data: Five Views on Balancing Research with Privacy and Protection', PLoS Genet 5(10) (2009), p. 1;
-
(2009)
PLoS Genet
, vol.5
, Issue.10
, pp. 1
-
-
Church, G.1
Heeney, C.2
Hawkins, N.3
De Vries, J.4
Boddington, P.5
Kaye, J.6
Bobrow, M.7
Weir, B.8
-
3
-
-
84937954352
-
Human rights, privacy and medical research: Analysing UK Policy on tissue and data
-
J. Gillot, 'Human rights, privacy and medical research: analysing UK Policy on tissue and data', Genetic Interest Group (2006). Available at: http://www.bionews.org.uk/page-37875.asp;
-
(2006)
Genetic Interest Group
-
-
Gillot, J.1
-
4
-
-
79951802866
-
Managing access to biobanks: How can we reconcile individual privacy and public
-
G. Laurie, P. Mallia, D. A. Frenkel, A. Krajewska, H. Moniz, S. Nordal, C. Pitz and J. Sandor, 'Managing Access to Biobanks: How Can We Reconcile Individual Privacy and Public', Medical Law International 10 (2010), p. 315-337.
-
(2010)
Medical Law International
, vol.10
, pp. 315-337
-
-
Laurie, G.1
Mallia, P.2
Frenkel, D.A.3
Krajewska, A.4
Moniz, H.5
Nordal, S.6
Pitz, C.7
Sandor, J.8
-
5
-
-
80054767343
-
Data protection and sample management in biobanking-A legal dichotomy
-
T. Schulte in den Bäumen et al., 'Data Protection and Sample Management in Biobanking-A Legal Dichotomy', Genomics, Society and Policy 6 (2010), pp. 33-46.
-
(2010)
Genomics, Society and Policy
, vol.6
, pp. 33-46
-
-
Schulte, T.1
-
6
-
-
34247635153
-
Legal pathways for cross-border research: Building a legal platform for biomedical academia
-
J. Bovenberg, 'Legal Pathways for Cross-border Research: Building a Legal Platform for Biomedical Academia', European Journal of Human Genetics 15 (2007), pp. 522-524.
-
(2007)
European Journal of Human Genetics
, vol.15
, pp. 522-524
-
-
Bovenberg, J.1
-
7
-
-
84937935771
-
-
accessed 8 July 2014
-
Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data, OJ L 281. Available at: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31995L0046:en:HTML (accessed 8 July 2014).
-
-
-
-
9
-
-
84890511264
-
A review of the barriers to sharing in biobanking
-
F. Colledge, B. Elger and H.C. Howard, 'A Review of the Barriers to Sharing in Biobanking', Biopreservation and Biobanking 11(6) (2013), p. 343.
-
(2013)
Biopreservation and Biobanking
, vol.11
, Issue.6
, pp. 343
-
-
Colledge, F.1
Elger, B.2
Howard, H.C.3
-
10
-
-
84937895938
-
-
accessed 8 April 2014
-
Available at: http://ec.europa.eu/justice/data-protection/article-29/index-en.htm (accessed 8 April 2014).
-
-
-
-
11
-
-
84937960291
-
To explore pan-European solutions for the cross-border data protection issues associated with BBMRI
-
See in general also J.-E. Litton and J. Bovenberg, 'To Explore Pan-European Solutions for the Cross-border Data Protection Issues Associated with BBMRI', BBMRI Joint Deliverable WP5 (2011);
-
(2011)
BBMRI Joint Deliverable WP5
-
-
Litton, J.-E.1
Bovenberg, J.2
-
12
-
-
84937501332
-
The end of individual control over health information: Promoting fair information practices and governance of biobank research
-
J. Kaye and M. Stranger, eds. (Farnham: Ashgate)
-
T. Lemmens and L. Austin, 'The End of Individual Control over Health Information: Promoting Fair Information Practices and Governance of Biobank Research', in J. Kaye and M. Stranger, eds. Principles and Practice in Biobank Governance. (Farnham: Ashgate, 2009), p. 243.
-
(2009)
Principles and Practice in Biobank Governance
, pp. 243
-
-
Lemmens, T.1
Austin, L.2
-
13
-
-
84937899190
-
-
accessed 8 April
-
English translation is available at: http://www.finlex.fi/fi/laki/kaannokset/1999/en19990523.pdf (accessed 8 April 2014).
-
(2014)
-
-
-
14
-
-
34247588224
-
A legal framework for biobanking: The German experience
-
J. Simon et al, 'A Legal Framework for Biobanking: The German Experience', European Journal of Human Genetics 15 (2007), pp. 528-532.
-
(2007)
European Journal of Human Genetics
, vol.15
, pp. 528-532
-
-
Simon, J.1
-
15
-
-
84937905972
-
-
accessed 8 July 2014
-
Federal Data Protection Act (BDSG), in the version promulgated on 14 January 2003 (Federal Law Gazette I, p. 66), last amended by Article 1 of the Act of 14 August 2009 (Federal Law Gazette I, p. 2814), in force from 1 September 2009. An English version of the Act is available at: http://www.bfdi.bund.de/EN/DataProtectionActs/Artikel/BDSG-idFv01092009.pdf?-blob=publicationFile (accessed 8 July 2014).
-
-
-
-
17
-
-
77955155561
-
Identifiability, genomics and U.K. Data protection law
-
L. Curren, P. Boddington, H. Gowans, N. Hawkins, N. Kanellopoulou, J. Kaye J, and K. Melham, 'Identifiability, Genomics and U.K. Data Protection Law', European Journal of Health Law 17(4) (2010), 329-344;
-
(2010)
European Journal of Health Law
, vol.17
, Issue.4
, pp. 329-344
-
-
Curren, L.1
Boddington, P.2
Gowans, H.3
Hawkins, N.4
Kanellopoulou, N.5
Kaye, J.J.6
Melham, K.7
-
19
-
-
0003692925
-
-
16 July
-
Data Protection Act 1998, 16 July 1998, Available at: http://www.legislation.gov.uk/ukpga/1998/29/contents
-
(1998)
Data Protection Act 1998
-
-
-
20
-
-
0004225782
-
-
(accessed 17 February 2000), (accessed 8 April 2014)
-
and The Data Protection (Processing of Sensitive Personal Data) Order 2000 (accessed 17 February 2000). Available at: http://www.legislation.gov.uk/uksi/2000/417/introduction/made (accessed 8 April 2014).
-
(2000)
The Data Protection (Processing of Sensitive Personal Data) Order
-
-
-
22
-
-
84937869931
-
-
accessed 8 July 2014
-
The latest draft is available at: http://www.europarl.europa.eu/sides/getDoc.do?type=TA&reference=P7-TA-2014-0212&language=EN&ring=A7-2013-0402 (accessed 8 July 2014).
-
-
-
-
25
-
-
84872413071
-
-
COM(2012)0011-C7-0025/2012-2012/0011(COD)). accessed 8 July 2014
-
Jan Philipp Albrecht; 'rapporteur' for the data protection dossier: DRAFT REPORT on the proposal for a regulation of the European Parliament and of the Council on the protection of individual with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation) (COM(2012)0011-C7-0025/2012-2012/0011(COD)). Available at: http://www.europarl.europa.eu/meetdocs/2009-2014/documents/libe/pr/922/922387/922387en.pdf (accessed 8 July 2014).
-
General Data Protection Regulation
-
-
Jan, P.A.1
-
26
-
-
84885926078
-
Beyond genetic privacy
-
accessed 2 February 2015
-
On the possible impact of the Draft Regulation (before the Albrecht amendments), see G. Lauss, A. Bialobrzeski, M. Korkhaus, K. Snell, J. Starkbaum, A.E. Vermeer, J. Weigel, H. Gottweis, I. Helén, J. Taupitz and P. Dabrock, 'Beyond genetic privacy. Past, Present and Future of Bioinformation Control Regimes', (2013), 45. Available at: http://private-gen.eu/uploads/media/PRIVATE-Gen-FINAL-REPORT-2013-01.pdf (accessed 2 February 2015).
-
(2013)
Past, Present and Future of Bioinformation Control Regimes
, pp. 45
-
-
Lauss, G.1
Bialobrzeski, A.2
Korkhaus, M.3
Snell, K.4
Starkbaum, J.5
Vermeer, A.E.6
Weigel, J.7
Gottweis, H.8
Helén, I.9
Taupitz, J.10
Dabrock, P.11
-
27
-
-
84880940838
-
Proposed EU data protection regulation is a threat to medical research
-
On the impact of the EU Regulation on biomedical research after Albrecht amendments, see M.C. Ploem, M.L. Essink-Bot, 'Proposed EU Data Protection Regulation is a Threat to Medical Research', British Medical Journal 364 (2013), f3534;
-
(2013)
British Medical Journal
, vol.364
, pp. 3534
-
-
Ploem, M.C.1
Essink-Bot, M.L.2
-
29
-
-
84898663838
-
Spies, data and research
-
L. Briceno Moraia and J. Kaye, 'Spies, Data and Research', EMBO Reports, 15(2) (2014), p. 123.
-
(2014)
EMBO Reports
, vol.15
, Issue.2
, pp. 123
-
-
Briceno Moraia, L.1
Kaye, J.2
-
30
-
-
84890511264
-
A review of the barriers to sharing in biobanking
-
F. Colledge, B. Elger and H.C. Howard, 'A Review of the Barriers to Sharing in Biobanking', Biopreservation and Biobanking 11(6) (2013), p. 344.
-
(2013)
Biopreservation and Biobanking
, vol.11
, Issue.6
, pp. 344
-
-
Colledge, F.1
Elger, B.2
Howard, H.C.3
-
31
-
-
84937908153
-
-
accessed 8 July 2014
-
See Article 9 of the Proposal for a regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (COM(2012)0011 Available at: http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-%2F%2FEP%2F%2FTEXT%2BREPORT%2BA7-2013-0402%2B0%2BDOC%2BXML%2BV0%2F%2FEN&language=EN#title1. (accessed 8 July 2014).
-
-
-
-
33
-
-
84937896631
-
-
accessed 8 April 2014
-
'Personal data' means any information relating to an identified or identifiable natural person ('data subject'); an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, unique identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social or gender identity of that person, Available at: http://www.janalbrecht.eu/fileadmin/material/Dokumente/DPR-Regulation-inofficialconsolidated-LIBE.pdf (accessed 8 April 2014).
-
-
-
-
34
-
-
84894302585
-
Can i access my personal genome? the current legal position in the UK
-
J. Kaye, N. Kanellopoulou, N. Hawkins, H. Gowans, L. Curren and K. Melham, 'Can I Access my Personal Genome? The Current Legal Position in the UK', Medical Law Review 22(1) (2014), p. 64;
-
(2014)
Medical Law Review
, vol.22
, Issue.1
, pp. 64
-
-
Kaye, J.1
Kanellopoulou, N.2
Hawkins, N.3
Gowans, H.4
Curren, L.5
Melham, K.6
-
35
-
-
50849101381
-
Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays
-
accessed 24 October 2014
-
N. Homer and others, 'Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures using High-density SNP Genotyping Microarrays', PLoS Genet 4(8) (2008), p. e1000167. Available at: http://www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1000167 (accessed 24 October 2014).
-
(2008)
PLoS Genet
, vol.4
, Issue.8
, pp. e1000167
-
-
Homer, N.1
-
36
-
-
84937823419
-
-
accessed 2 February 2012
-
'Indeed, using a pseudonym means that it is possible to backtrack to the individual, so that the individual's identity can be discovered, but then only under predefined circumstances. In that case, although data protection rules apply, the risks at stake for the individuals with regard to the processing of such indirectly identifiable information will most often be low, so that the application of these rules will justifiably be more flexible than if information on directly identifiable individuals were processed' (Article 29 Working Party, Opinion 4/2007 on the concept of personal data, 20 June 2007, WP 136 2007). Available at: http://ec.europa.eu/justice/policies/privacy/docs/wpdocs/2007/wp136-en.pdf#page=15&zoom=auto,0,844 (accessed 2 February 2012).
-
-
-
-
37
-
-
67349132836
-
Data sharing in genomics-Re-shaping scientific practice
-
J. Kaye, C. Heeney, N. Hawkins and J. de Vries, P. Boddington, 'Data Sharing in Genomics-Re-shaping Scientific Practice', Nature Reviews, Genetics 10 (2009), 334.
-
(2009)
Nature Reviews, Genetics
, vol.10
, pp. 334
-
-
Kaye, J.1
Heeney, C.2
Hawkins, N.3
De Vries, J.4
Boddington, P.5
-
38
-
-
50849101381
-
Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays
-
N. Homer, et al. 'Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-density SNP Genotyping Microarrays', PLoS Genetetics 4 (2008), p. e1000167;
-
(2008)
PLoS Genetetics
, vol.4
, pp. e1000167
-
-
Homer, N.1
-
39
-
-
51149088120
-
Genetic privacy. Whole-genome data not anonymous, challenging assumptions
-
J. Couzin, 'Genetic Privacy. Whole-genome Data not Anonymous, Challenging Assumptions', Science 321 (2008), p. 1278.
-
(2008)
Science
, vol.321
, pp. 1278
-
-
Couzin, J.1
-
40
-
-
84871136817
-
-
accessed 8 April 2014
-
Information Commissioner's Office (2012). Available at: http://www.ico.org.uk/for-organisations/data-protection/topic-guides/∗/media/documents/library/Data-Protection/Practical-application/anonymisation-code.ashx) (accessed 8 April 2014).
-
(2012)
Information Commissioner's Office
-
-
-
41
-
-
84937942382
-
Anonymisation: Managing data protection risk-The new UK code
-
See also R. assey, 'Anonymisation: Managing Data Protection Risk-the New UK Code', Computer and Telecommunications Law Review 19 (2013), p. 86.
-
(2013)
Computer and Telecommunications Law Review
, vol.19
, pp. 86
-
-
Assey, R.1
-
42
-
-
84937909322
-
Anonymizing data for secondary use
-
accessed 2 february 2014
-
S. Lindsay and J. Goldring, 'Anonymizing Data for Secondary Use', Encyclopedia of Case Study Research 2010, Available at: http://srmo.sagepub.com/view/encyc-of-case-studyresearch/n10.xml (accessed 2 february 2014);
-
(2010)
Encyclopedia of Case Study Research
-
-
Lindsay, S.1
Goldring, J.2
-
43
-
-
79955608859
-
Methods for de-identification of electronic health records for genomic research
-
K.E. Emam, Methods for De-identification of Electronic Health Records for Genomic Research', Genome Medicine 3 (2011), 25.
-
(2011)
Genome Medicine
, vol.3
, pp. 25
-
-
Emam, K.E.1
-
44
-
-
84937877104
-
-
accessed 8 April 2014
-
Codes of Conduct for medical research set out by the Dutch Council of the Federation of Medical Scientific Societies (Federatie Van Medisch Wetenschappelijke Verenigingen). Available at: http://www.federa.org/gedragscodes-codes-conduct-en (accessed 8 April 2014).
-
-
-
-
45
-
-
84937864832
-
-
accessed 8 July 2014
-
Available at: http://www.medlaw.nl/wp-content/uploads/commentsdutchrshgdprv22.pdf at 2 (accessed 8 July 2014).
-
-
-
-
46
-
-
84937955215
-
-
accessed 8 July 2014
-
Available at: http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy-communications/documents/web-document/wtvm054713.pdf (accessed 8 July 2014).
-
-
-
-
47
-
-
84937846268
-
-
accessed 8 April 2014, accessed 2 Februaty 2015
-
Under Amendment 23 of the so-called Albrecht amendments: [. ] This Regulation should not apply to anonymous data, meaning any data that cannot be related, directly or indirectly, alone or in combination with associated data, to a natural person or where establishing such a relation would require a disproportionate amount of time, expense, and effort, taking into account the state of the art in technology at the time of the processing and the possibilities for development during the period for which the data will be processed. (accessed 8 April 2014). Available at: http://www.janalbrecht.eu/fileadmin/material/Dokumente/DPR-Regulation-inofficial-consolidated-LIBE.pdf (accessed 2 Februaty 2015).
-
-
-
-
49
-
-
84930247205
-
Scientific and managerial premises and unresolved issues in tumor biobanking activities
-
G. Pascuzzi, U. Izzo and M. Macilotti, eds. (Berlin Heidelberg: Springer)
-
M. Barbareschi, S. Fasanella, C. Cantaloni and S. Giuliani, 'Scientific and Managerial Premises and Unresolved Issues in Tumor Biobanking Activities', in G. Pascuzzi, U. Izzo and M. Macilotti, eds. Comparative issues in the governance of research biobanks. (Berlin Heidelberg:Springer, 2013), pp. 301-309.;
-
(2013)
Comparative Issues in the Governance of Research Biobanks
, pp. 301-309
-
-
Barbareschi, M.1
Fasanella, S.2
Cantaloni, C.3
Giuliani, S.4
-
50
-
-
79951802866
-
Managing access to biobanks: How can we reconcile individual privacy and public interest in genetic research?
-
G. Laurie, P. Mallia, David A. Frenkel, A. Krajewska and H. Moniz, 'Managing Access to Biobanks: How Can We Reconcile Individual Privacy and Public Interest in Genetic Research?', Medical Law International 10(4) (2010), pp. 315-337.
-
(2010)
Medical Law International
, vol.10
, Issue.4
, pp. 315-337
-
-
Laurie, G.1
Mallia, P.2
David, A.F.3
Krajewska, A.4
Moniz, H.5
-
51
-
-
80053307605
-
From single biobanks to international networks: Developing e-governance
-
J. Kaye, 'From Single Biobanks to International Networks: Developing E-governance', Human Genetics 130 (2011), p. 377.
-
(2011)
Human Genetics
, vol.130
, pp. 377
-
-
Kaye, J.1
-
52
-
-
79960288854
-
Towards a data sharing code of conduct for international genomic research
-
B.M. Knoppers, J.R. Harris, A.M. Tasse, I. Budin-Liøsne, J. Kaye, M. Deschênes and M. Zawati, 'Towards a Data Sharing Code of Conduct for International Genomic Research', Genome Medicine 3 (2011), p. 46. Available at: http://genomemedicine.com/content/3/7/46
-
(2011)
Genome Medicine
, vol.3
, pp. 46
-
-
Knoppers, B.M.1
Harris, J.R.2
Tasse, A.M.3
Budin-Liøsne, I.4
Kaye, J.5
Deschênes, M.6
Zawati, M.7
-
56
-
-
84937846459
-
-
accessed 2 February 2015
-
M. Taylor and B. Thompson, 'Update on the European Data Protection Regulation', Available at: http://www.p3g.org/sites/default/files/site/default/files/Taylor%20Thompson%20-%20Data%20Protection%20Regulation%20Update%2025%20February%202014%20V3.pdf (accessed 2 February 2015).
-
Update on the European Data Protection Regulation
-
-
Taylor, M.1
Thompson, B.2
-
57
-
-
84887916785
-
Data harmonization and federated analysis of population-based studies: The bioshare project
-
accessed 2 February 2015
-
D. Doiron et al., 'Data Harmonization and Federated Analysis of Population-based Studies: The BioSHaRE Project', Emerging Themes in Epidemiology 10 (2013), p. 12. Available at: http://www.webcitation.org/query.php?url=http://www.bioshare.eu&refdoi=10.1186/1472-6823-14-9 (accessed 2 February 2015).
-
(2013)
Emerging Themes in Epidemiology
, vol.10
, pp. 12
-
-
Doiron, D.1
-
58
-
-
78149243538
-
DataSHIELD: Resolving a conflict in contemporary bioscience-performing a pooled analysis of individual-level data without sharing the data
-
(Data aggregation through anonymous summary statistics from harmonized individual level databases), M. Wolfson et al., 'DataSHIELD: Resolving a Conflict in Contemporary Bioscience-Performing a Pooled Analysis of Individual-level Data Without Sharing the Data', International Journal of Epidemiology 39(5) (2010), pp. 1372-1382.
-
(2010)
International Journal of Epidemiology
, vol.39
, Issue.5
, pp. 1372-1382
-
-
Wolfson, M.1
-
60
-
-
84893193652
-
The prevalence of metabolic syndrome and metabolically healthy obesity in Europe: A collaborative analysis of ten large cohort studies
-
accessed 2 February 2015
-
J.V.van Vlier-Ostaptchouk et al., 'The Prevalence of Metabolic Syndrome and Metabolically Healthy Obesity in Europe: A Collaborative Analysis of Ten Large Cohort Studies', BMC Endocrine Disorders 14 (2014), p. 9. Available at: http://www.biomedcentral.com/1472-6823/14/9 (accessed 2 February 2015).
-
(2014)
BMC Endocrine Disorders
, vol.14
, pp. 9
-
-
Van Vlier-Ostaptchouk, J.V.1
-
62
-
-
84864343719
-
-
T. Adamusiak et al., 'Observ-OM and Observ-TAB: Universal Syntax Solutions for the Integration, Search, and Exchange of Phenotype and Genotype Information', Human Mutation 33(5) (2012), pp. 867-873.
-
(2012)
Observ-OM and Observ-TAB: Universal Syntax Solutions for the Integration, Search, and Exchange of Phenotype and Genotype Information, Human Mutation
, vol.33
, Issue.5
, pp. 867-873
-
-
Adamusiak, T.1
-
64
-
-
31344467157
-
Do we need a uniform regulatory system for biobanks across Europe?
-
J. Kaye, 'Do We Need a Uniform Regulatory System for Biobanks Across Europe?', European Journal of Human Genetics 14(2) (2006), pp. 245-248.
-
(2006)
European Journal of Human Genetics
, vol.14
, Issue.2
, pp. 245-248
-
-
Kaye, J.1
|