Affiliation: University of Oxford
- 'Pop-Up' Governance: developing internal governance frameworks for consortia: the example of UK10KJane Kaye
HeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK
Life Sci Soc Policy 11:10. 2015..In this paper, we use UK10K to describe how 'pop-up' governance works on the ground and how relational, hierarchical and contractual governance mechanisms are used in this new form of network governance. ..
- Can I access my personal genome? The current legal position in the UKJane Kaye
Department of Population Health, University of Oxford, Oxford, UK
Med Law Rev 22:64-86. 2014..The authors describe the policy implications in this area and conclude that, for now, the law appears to strike an appropriate balance, but new policy will need to be developed to address this issue. ..
- 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...
- 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...
- Genetic research on the UK population--do new principles need to be developed?J Kaye
St Catherine s College, University of Oxford, Manor Road, OX1 3UJ, Oxford, UK
Trends Mol Med 7:528-30. 2001..However, this new population collection will not conform to standards established by other national genetic databases, and the UK government report has not accounted for key ethical issues...
- 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...
- Assessing the privacy risks of data sharing in genomicsC Heeney
The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Oxford, UK
Public Health Genomics 14:17-25. 2011....