Affiliation: University of Oxford
- Towards a data sharing Code of Conduct for international genomic researchBartha Maria Knoppers
Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada
Genome Med 3:46. 2011..We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion...
- Data sharing in genomics--re-shaping scientific practiceJane Kaye
The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK
Nat Rev Genet 10:331-5. 2009..We discuss the challenges that must be addressed if the full benefits of data sharing, as envisaged by funders, are to be realized...
- The regulation of direct-to-consumer genetic testsJane Kaye
Ethox Centre, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LG, UK
Hum Mol Genet 17:R180-3. 2008..The purpose of this paper is to explore some of these issues, at a time when the science and the law are changing rapidly...
- Ethical implications of the use of whole genome methods in medical researchJane Kaye
Department of Public Health, Ethox Centre, University of Oxford, Headington, DPHPC, Old Road Campus, Headington, Oxford, Oxon OX3 7LF, UK
Eur J Hum Genet 18:398-403. 2010..Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created...
- Patents and translational research in genomicsJane Kaye
Oxford Genetics Knowledge Park, The Ethox Centre, DPHPC, University of Oxford, Gibson Building Block 21, Radcliffe Infirmary, Woodstock Road, Oxford, OX2 6HA, UK
Nat Biotechnol 25:739-41. 2007
- Do we need a uniform regulatory system for biobanks across Europe?Jane Kaye
Oxford Genetic Knowledge Park, The Ethox Centre, DPHPC, University of Oxford, Headington, Oxford, UK
Eur J Hum Genet 14:245-8. 2006..The purpose of this paper is to discuss some of the preliminary issues that would need to be considered before such a regulatory system for biobanks could be developed within Europe...
- Consent forms in genomics: the difference between law and practicePaula Boddington
HeLEX Centre for Health, Law and Emerging Technologies, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK
Eur J Health Law 18:491-519. 2011..This raises questions about what should be put in informed consent forms for research participants. These findings could be beneficial for the formulation of participant information and consent documentation in the future studies...
- Identifiability, genomics and U.K. data protection lawLiam Curren
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
Eur J Health Law 17:329-44. 2010..We undertake a timely reappraisal of these laws--particularly new penalties--and identifiability in genomic research...
- The tension between data sharing and the protection of privacy in genomics researchJane Kaye
HeLEX, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK
Annu Rev Genomics Hum Genet 13:415-31. 2012..These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research...
- Planning for translational research in genomicsNaomi Hawkins
The Ethox Centre, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK
Genome Med 1:87. 2009..This piece discusses the key areas of collaboration agreements, distribution of revenues and recruitment and sample collection that are increasingly important to successful translational research in genomics...
- From patients to partners: participant-centric initiatives in biomedical researchJane Kaye
HeLEX, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK
Nat Rev Genet 13:371-6. 2012..Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs...
- From single biobanks to international networks: developing e-governanceJane Kaye
Department of Public Health, University of Oxford, Oxford, UK
Hum Genet 130:377-82. 2011..I suggest that a move to digital governance mechanisms might be a start to making research governance systems more appropriate for the 21st century...
- Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United KingdomSusan M C Gibbons
ELSAGEN project, The Ethox Centre, University of Oxford, UK
Eur J Health Law 12:103-33. 2005..This analysis may offer some guidance for policymakers in other jurisdictions where PGDs have been proposed or are being established...
- Sample, data use and protection in biobanking in Europe: legal issuesEleni Zika
IPTS Institute for Prospective Technological Studies, Joint Research Centre, European Commission, Seville, Spain
Pharmacogenomics 9:773-81. 2008..The workshop focused on the internal linkage of data and samples stored in a biobank, and the external linkage of biobanks with secondary information resources, such as cancer registries...
- Governing UK Biobank: the importance of ensuring public trustRichard Tutton
Institute for the Study of Genetics, Biorisks and Society IGBiS, University of Nottingham, Nottingham NG7 2RD, UK
Trends Biotechnol 22:284-5. 2004..Therefore, they must be considered carefully because the UK Biobank will be the first ever genetic database of a general population of this size to become operational, and will be used as a model for other projects of this kind...
- Research ethics recommendations for whole-genome research: consensus statementTimothy Caulfield
Health Law Institute, University of Alberta, Edmonton, Alberta, Canada
PLoS Biol 6:e73. 2008