Jane Kaye

Jane Kaye

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Equitable Participation in Biobanks: The Risks and Benefits of a "Dynamic Consent" Approach.

Front Public Health 2018 5;6:253. Epub 2018 Sep 5.

Melbourne Law School, The University of Melbourne, Carlton, VIC, Australia.

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http://dx.doi.org/10.3389/fpubh.2018.00253DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6133951PMC
September 2018

Desiderata for digital consent in genomic research.

J Community Genet 2018 Apr 23;9(2):191-194. Epub 2018 Jan 23.

Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, 41013, Seville, Spain.

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http://link.springer.com/10.1007/s12687-017-0355-z
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http://dx.doi.org/10.1007/s12687-017-0355-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5849705PMC
April 2018

Including all voices in international data-sharing governance.

Hum Genomics 2018 03 7;12(1):13. Epub 2018 Mar 7.

CNRS, Toulouse, France; Joint research unit on epidemiology and public health, Inserm (National Institute for Health and Medical Research) and University Toulouse III Paul Sabatier, Toulouse, France.

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http://dx.doi.org/10.1186/s40246-018-0143-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5842530PMC
March 2018

Making the most of the waiting room: Electronic patient engagement, a mixed methods study.

Digit Health 2018 Jan-Dec;4:2055207617751304. Epub 2018 Jan 10.

4Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, UK.

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http://dx.doi.org/10.1177/2055207617751304DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6001187PMC
January 2018

Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.

JMIR Res Protoc 2017 Dec 12;6(12):e245. Epub 2017 Dec 12.

Department of Social Medicine, Graduate School of Medicine, Osaka University, Osaka, Japan.

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http://dx.doi.org/10.2196/resprot.7407DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5743923PMC
December 2017

The European General Data Protection Regulation: challenges and considerations for iPSC researchers and biobanks.

Regen Med 2017 09 4;12(6):693-703. Epub 2017 Oct 4.

Nuffield Department of Population Health, HeLEX - Center for Health, Law & Emerging Technologies, University of Oxford, Ewert House, Ewert Place, Banbury Road, Oxford OX2 7DD, UK.

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https://www.futuremedicine.com/doi/10.2217/rme-2017-0068
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http://dx.doi.org/10.2217/rme-2017-0068DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5857917PMC
September 2017

The RUDY study: using digital technologies to enable a research partnership.

Eur J Hum Genet 2017 06 26;25(7):816-822. Epub 2017 Apr 26.

Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1038/ejhg.2017.57DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5520069PMC
June 2017

Returning Results in Biobank Research: Global Trends and Solutions.

Genet Test Mol Biomarkers 2017 Mar 1;21(3):128-131. Epub 2017 Feb 1.

1 Institute for Biomedical Ethics, University of Basel , Basel, Switzerland .

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http://dx.doi.org/10.1089/gtmb.2016.0394DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5367909PMC
March 2017

Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia.

Orphanet J Rare Dis 2016 11 28;11(1):160. Epub 2016 Nov 28.

Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Oxford NIHR Musculoskeletal Biomedical Research Unit, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK.

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http://ojrd.biomedcentral.com/articles/10.1186/s13023-016-05
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http://dx.doi.org/10.1186/s13023-016-0538-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5126812PMC
November 2016

Personalized assent for pediatric biobanks.

BMC Med Ethics 2016 10 12;17(1):59. Epub 2016 Oct 12.

Department of Medical Humanities, Division Julius Center, University Medical Center Utrecht, Office Stratenum 6.131, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands.

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http://dx.doi.org/10.1186/s12910-016-0142-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5062866PMC
October 2016

eRegistries: governance for electronic maternal and child health registries.

BMC Pregnancy Childbirth 2016 Sep 23;16(1):279. Epub 2016 Sep 23.

Department of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5035445PMC
http://dx.doi.org/10.1186/s12884-016-1063-0DOI Listing
September 2016

Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.

BMC Med Ethics 2016 08 24;17(1):51. Epub 2016 Aug 24.

Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, 565-0871, Osaka, Japan.

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http://dx.doi.org/10.1186/s12910-016-0132-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4995774PMC
August 2016

Challenges and opportunities for ELSI early career researchers.

BMC Med Ethics 2016 07 8;17(1):37. Epub 2016 Jul 8.

HeLEX - Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom.

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http://dx.doi.org/10.1186/s12910-016-0121-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939044PMC
July 2016

Consent for Biobanking: The Legal Frameworks of Countries in the BioSHaRE-EU Project.

Biopreserv Biobank 2016 Jun 4;14(3):195-200. Epub 2016 May 4.

5 INSERM UMR 1027 Département d'épidémiologie et de santé publique, Faculté de Médecine, Université Paul Sabatier-Toulouse III , Toulouse, France .

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http://dx.doi.org/10.1089/bio.2015.0123DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5967579PMC
June 2016

Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts.

Biopreserv Biobank 2016 Jun 16;14(3):201-6. Epub 2016 May 16.

3 Public Population Project in Genomics and Society (P3G) , Montreal, Canada .

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http://dx.doi.org/10.1089/bio.2015.0124DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939924PMC
June 2016

Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.

BMC Med Ethics 2016 06 4;17(1):33. Epub 2016 Jun 4.

333 MacNider Hall, Campus Box 7240, University of North Carolina, Chapel Hill, 333S. Columbia Road, Chapel Hill, NC, 27599-7240, USA.

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http://dx.doi.org/10.1186/s12910-016-0117-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893207PMC
June 2016

'Pop-Up' Governance: developing internal governance frameworks for consortia: the example of UK10K.

Life Sci Soc Policy 2015 28;11:10. Epub 2015 Sep 28.

HeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1186/s40504-015-0028-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4584211PMC
May 2016

Governance Through Privacy, Fairness, and Respect for Individuals.

EGEMS (Wash DC) 2016 31;4(2):1207. Epub 2016 Mar 31.

Genetic Alliance.

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http://dx.doi.org/10.13063/2327-9214.1207DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4827784PMC
May 2016

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.

J Med Internet Res 2016 Apr 15;18(4):e66. Epub 2016 Apr 15.

Arthritis Research UK Centre for Epidemiology, Manchester Academic Health Sciences Centre, The University of Manchester, Manchester, United Kingdom.

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http://dx.doi.org/10.2196/jmir.5011DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851723PMC
April 2016

Biobank Report: United Kingdom.

J Law Med Ethics 2016 03;44(1):96-105

Jane Kaye, Grad Dip Leg Pract, is the Director of the HeLEX Centre. Jessica Bell, LL.B., M.A., joined HeLEX in March 2014 as research assistant to Professor Jane Kaye. Colin Mitchell, M.St., joined HeLEX in January 2014 as a researcher in law. Linda Briceno, LL.B., D.Phil., was a researcher in law at HeLEX until July 2015.

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http://dx.doi.org/10.1177/1073110516644202DOI Listing
March 2016

The evolution of withdrawal: negotiating research relationships in biobanking.

Life Sci Soc Policy 2014 5;10:16. Epub 2014 Oct 5.

Department of Population Health, University of Oxford, Oxford, OX3 7LF, UK.

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http://dx.doi.org/10.1186/s40504-014-0016-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4512976PMC
December 2015

StemBANCC: Governing Access to Material and Data in a Large Stem Cell Research Consortium.

Stem Cell Rev Rep 2015 Oct;11(5):681-7

HeLEX - Centre for Health, Law and Emerging Technologies, Department of Public Health, University of Oxford, Old Road Campus, Oxford, OX3 7LF, UK,

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http://dx.doi.org/10.1007/s12015-015-9599-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561067PMC
October 2015

Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.

Digit Health 2015 Jan-Dec;1:2055207615605644. Epub 2015 Sep 28.

HeLEX Centre, Nuffield Department of Population Health, University of Oxford, UK.

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http://dx.doi.org/10.1177/2055207615605644DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6001239PMC
September 2015

Dynamic consent: a patient interface for twenty-first century research networks.

Eur J Hum Genet 2015 Feb 7;23(2):141-6. Epub 2014 May 7.

Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1038/ejhg.2014.71DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4130658PMC
February 2015

Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.

JMIR Med Inform 2015 Jan 13;3(1):e3. Epub 2015 Jan 13.

Arthritis Research UK Centre for Epidemiology, University of Manchester, Manchester, United Kingdom.

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http://dx.doi.org/10.2196/medinform.3525DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319083PMC
January 2015

The emerging need for family-centric initiatives for obtaining consent in personal genome research.

Genome Med 2014 17;6(12):118. Epub 2014 Dec 17.

Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka 565-0871 Japan ; Institute for Integrated Cell-Material Sciences (iCeMS), Kyoto University Yoshida Ushinomiya-cho, Sakyo-ku, Kyoto 606-8501 Japan.

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http://dx.doi.org/10.1186/s13073-014-0118-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295276PMC
January 2015

Can I access my personal genome? The current legal position in the UK.

Med Law Rev 2014 17;22(1):64-86. Epub 2013 Oct 17.

*Department of Population Health, University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1093/medlaw/fwt027DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3930166PMC
November 2014

Implementing a successful data-management framework: the UK10K managed access model.

Genome Med 2013 15;5(11):100. Epub 2013 Nov 15.

Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK.

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http://dx.doi.org/10.1186/gm504DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978569PMC
May 2014

Data sharing policy design for consortia: challenges for sustainability.

Genome Med 2014 29;6(1). Epub 2014 Jan 29.

University of Exeter Law School, Amory Building, Rennes Drive, Exeter EX4 4RJ, UK.

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http://dx.doi.org/10.1186/gm523DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978924PMC
May 2014

Health database: Restore public trust in care.data project.

Nature 2014 Apr;508(7497):458

University of Oxford, UK.

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http://dx.doi.org/10.1038/508458eDOI Listing
April 2014

Spies, data and research.

EMBO Rep 2014 Mar 27;15(3):200. Epub 2014 Jan 27.

Nuffield Department of Population Health University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1002/embr.201338387DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989679PMC
March 2014

A dynamic model of patient consent to sharing of medical record data.

BMJ 2014 Feb 5;348:g1294. Epub 2014 Feb 5.

Arthritis Research UK Centre for Epidemiology, University of Manchester, Manchester M13 9PT, UK.

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http://dx.doi.org/10.1136/bmj.g1294DOI Listing
February 2014

The tension between data sharing and the protection of privacy in genomics research.

Authors:
Jane Kaye

Annu Rev Genomics Hum Genet 2012 9;13:415-31. Epub 2012 Mar 9.

HeLEX, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK.

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http://dx.doi.org/10.1146/annurev-genom-082410-101454DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4337968PMC
January 2013

Consent forms in genomics: the difference between law and practice.

Eur J Health Law 2011 Dec;18(5):491-519

HeLEX Centre for Health, Law and Emerging Technologies, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK.

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December 2011

From single biobanks to international networks: developing e-governance.

Authors:
Jane Kaye

Hum Genet 2011 Sep 23;130(3):377-82. Epub 2011 Jul 23.

Department of Public Health, University of Oxford, Oxford, UK.

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http://dx.doi.org/10.1007/s00439-011-1063-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3155683PMC
September 2011

From genomic databases to translation: a call to action.

J Med Ethics 2011 Aug 26;37(8):515-6. Epub 2011 May 26.

Department of Human Genetics, McGill University, Montreal, Quebec, H3A 1A4, Canada.

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http://dx.doi.org/10.1136/jme.2011.043042DOI Listing
August 2011

From consent to institutions: designing adaptive governance for genomic biobanks.

Soc Sci Med 2011 Aug 2;73(3):367-74. Epub 2011 Jul 2.

University of Guelph, Psychology, MacKinnon Ext. (Bldg. 154), 87 Trent Lane, Guelph, Ontario, Canada.

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http://dx.doi.org/10.1016/j.socscimed.2011.05.046DOI Listing
August 2011

Towards a data sharing Code of Conduct for international genomic research.

Genome Med 2011 Jul 14;3(7):46. Epub 2011 Jul 14.

Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada.

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http://dx.doi.org/10.1186/gm262DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221544PMC
July 2011

Identifiability, genomics and U.K. data protection law.

Eur J Health Law 2010 Sep;17(4):329-44

Centre for Health, Law and Emerging Technologies at Oxford (HeLEX), Department of Public Health and Primary Care, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK.

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September 2010

Ethical implications of the use of whole genome methods in medical research.

Eur J Hum Genet 2010 Apr 4;18(4):398-403. Epub 2009 Nov 4.

Department of Public Health, Ethox Centre, University of Oxford, Headington, DPHPC, Old Road Campus, Headington, Oxford, Oxon OX3 7LF, UK.

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http://www.nature.com/articles/ejhg2009191
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http://dx.doi.org/10.1038/ejhg.2009.191DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2879322PMC
April 2010

Building a foundation for biobanking: the 2009 OECD guidelines on human biobanks and genetic research databases (HBGRDs).

Authors:
Jane Kaye

Eur J Health Law 2010 Mar;17(2):187-90

Centre for Health, Law and Emerging Technologies, Oxford, UK.

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March 2010

Planning for translational research in genomics.

Genome Med 2009 Sep 29;1(9):87. Epub 2009 Sep 29.

The Ethox Centre, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.

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http://dx.doi.org/10.1186/gm87DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2768994PMC
September 2009

Data sharing in genomics--re-shaping scientific practice.

Nat Rev Genet 2009 05;10(5):331-5

The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.

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http://dx.doi.org/10.1038/nrg2573DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672783PMC
May 2009

The regulation of direct-to-consumer genetic tests.

Authors:
Jane Kaye

Hum Mol Genet 2008 Oct;17(R2):R180-3

Ethox Centre, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LG, UK.

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http://dx.doi.org/10.1093/hmg/ddn253DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672785PMC
October 2008

Sample, data use and protection in biobanking in Europe: legal issues.

Pharmacogenomics 2008 Jun;9(6):773-81

IPTS Institute for Prospective Technological Studies, Joint Research Centre, European Commission, Seville, Spain.

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http://dx.doi.org/10.2217/14622416.9.6.773DOI Listing
June 2008

Patents and translational research in genomics.

Nat Biotechnol 2007 Jul;25(7):739-41

Oxford Genetics Knowledge Park, The Ethox Centre, DPHPC, University of Oxford, Gibson Building/Block 21, Radcliffe Infirmary, Woodstock Road, Oxford, OX2 6HA, UK.

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http://www.nature.com/articles/nbt0707-739
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http://dx.doi.org/10.1038/nbt0707-739DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1955681PMC
July 2007

GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE.

Kings Law J 2007 ;18(2):ukpmcpa1468

Dr Jane Kaye is a Research Officer with the Oxford Genetics Knowledge Park. She is based at the Ethox Centre, University of Oxford and is a principal investigator on a three-year project entitled "Governing Genetic Databases", funded under the Wellcome Trust's Biomedical Ethics programme (award ref: 076070/Z/04/Z). Dr Sue Gibbons is a Researcher in Law at the Ethox Centre, University of Oxford, and is undertaking legal research as part of that three-year project.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2493389PMC
January 2007

Do we need a uniform regulatory system for biobanks across Europe?

Authors:
Jane Kaye

Eur J Hum Genet 2006 Feb;14(2):245-8

Oxford Genetic Knowledge Park, The Ethox Centre, DPHPC, University of Oxford, Headington, Oxford, UK.

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http://dx.doi.org/10.1038/sj.ejhg.5201530DOI Listing
February 2006

Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom.

Eur J Health Law 2005 Jun;12(2):103-33

ELSAGEN project, The Ethox Centre, University of Oxford, UK.

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June 2005

Governing UK Biobank: the importance of ensuring public trust.

Trends Biotechnol 2004 Jun;22(6):284-5

Institute for the Study of Genetics, Biorisks and Society (IGBiS), University of Nottingham, Nottingham NG7 2RD, UK.

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http://dx.doi.org/10.1016/j.tibtech.2004.04.007DOI Listing
June 2004