List of works by Jane Kaye

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

scientific article

A Duty To Warn Relatives in Clinical Genetics: Arguably 'Fair just and reasonable' in English Law?

scientific article

A P3G generic access agreement for population genomic studies

scientific article (publication date: May 2013)

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

scientific article published on 5 February 2014

A review of the key issues associated with the commercialization of biobanks

scientific article (publication date: March 2014)

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

scientific article published on 16 May 2016

Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

scientific article published on 12 February 2019

Biobank Report: United Kingdom

scientific article published on March 2016

Biomodifying the ‘natural’: from Adaptive Regulation to Adaptive Societal Governance

scientific article published in 2022

Building a data sharing model for global genomic research

scientific article

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

scientific article (publication date: 2014)

Challenges and opportunities for ELSI early career researchers

scientific article

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

scientific article

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

scientific article published on 4 May 2016

Consent forms in genomics: the difference between law and practice

scientific article published on December 2011

Data sharing in genomics--re-shaping scientific practice

scientific article

Data sharing policy design for consortia: challenges for sustainability

scientific article (publication date: 2014)

Desiderata for digital consent in genomic research.

scientific article

Direct-to-consumer genetic testing for predicting sports performance and talent identification: Consensus statement

scientific article

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

scientific article published on February 2006

Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.

scientific article

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

scientific article

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

scientific article

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

scientific article published on 05 September 2018

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

scientific article (publication date: April 2010)

Exploring the potential duty of care in clinical genomics under UK law.

scientific article published on 14 August 2017

Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

scientific article

From consent to institutions: designing adaptive governance for genomic biobanks

scientific article published on 02 July 2011

From genomic databases to translation: a call to action

scientific article

From patients to partners: participant-centric initiatives in biomedical research

scientific article

From single biobanks to international networks: developing e-governance

scientific article

GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE

scientific article (publication date: 2007)

Genetic research on the UK population--do new principles need to be developed?

scientific article

Genetic testing without consent: the implications of the new Human Tissue Act 2004

scientific article published on December 2006

Governance Through Privacy, Fairness, and Respect for Individuals

scientific article

Governing UK Biobank: the importance of ensuring public trust

scientific article published on June 2004

Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era

scientific article

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

scientific article published in April 2014

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

scientific article published on 28 November 2016

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

scientific article

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

scientific article

Including all voices in international data-sharing governance.

scientific article published on 7 March 2018

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review

scientific article published on 04 August 2020

Legislation on direct-to-consumer genetic testing in seven European countries

scientific article

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

scientific article published on June 2005

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

scientific article published on 10 January 2018

Managing clinically significant findings in research: the UK10K example

scientific article

Marketing of unproven stem cell-based interventions: A call to action

scientific article published on July 2017

Motivations for data sharing-views of research participants from four European countries: A DIRECT study

scientific article published on 30 January 2019

New technologies for DNA analysis--a review of the READNA Project

scientific article

PGP-UK: a research and citizen science hybrid project in support of personalized medicine

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

scientific article published on 12 December 2017

Patents and translational research in genomics

scientific article

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

scientific article

Personalized assent for pediatric biobanks

scientific article

Planning for translational research in genomics

scientific article (publication date: 29 September 2009)

Prepublication data sharing

scientific article

Public access to genome-wide data: five views on balancing research with privacy and protection

scientific article (publication date: October 2009)

Reflections on dynamic consent in biomedical research: the story so far

scientific article published on 28 November 2020

Research ethics recommendations for whole-genome research: consensus statement

scientific article

Research priorities. ELSI 2.0 for genomics and society

scientific article

Returning Results in Biobank Research: Global Trends and Solutions.

scientific article published on February 2017

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

scientific article

Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT Study

scientific article published on 28 September 2018

Spies, data and research

scientific article (publication date: March 2014)

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

scientific article

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

scientific article published on 4 October 2017

The RUDY study platform - a novel approach to patient driven research in rare musculoskeletal diseases

scientific article

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

scientific article published on 26 April 2017

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

scientific article published on 17 December 2014

The evolution of withdrawal: negotiating research relationships in biobanking

scientific article published on 5 October 2014

The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

scholarly article by Harriet J A Teare et al published 4 September 2018 in Life sciences, society and policy

The regulation of direct-to-consumer genetic tests

scientific article published on October 2008

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

scientific article

Toward a roadmap in global biobanking for health

scientific article (publication date: November 2012)

Toward better governance of human genomic data

scientific article published on 01 January 2021

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

scientific article

Towards a data sharing Code of Conduct for international genomic research

scientific article

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

scientific article

eRegistries: Electronic registries for maternal and child health

scientific article published on 19 January 2016

eRegistries: governance for electronic maternal and child health registries.

scientific article

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