Jane Kaye

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

Nisha Shah, Victoria Coathup, Harriet Teare, Ian Forgie, Giuseppe Nicola Giordano, Tue Haldor Hansen, Lenka Groeneveld, Michelle Hudson, Ewan Pearson, Hartmut Ruetten, Jane Kaye

Journal article  |  2019  |  Genetics in Medicine

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

Nisha Shah, Victoria Coathup, Harriet Teare, Ian Forgie, Giuseppe Nicola Giordano, Tue Haldor Hansen, Lenka Groeneveld, Michelle Hudson, Ewan Pearson, Hartmut Ruetten, Jane Kaye

Journal article  |  2019  |  European Journal of Human Genetics

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

Deborah Mascalzoni, Heidi Beate Bentzen, Isabelle Budin-Ljosne, Lee Andrew Bygrave, Jessica Bell, Edward S Dove, Christian Fuchsberger, Kristian Hveem, Michaela Th Mayrhofer, Viviana Meraviglia, David R O'Brien, Cristian Pattaro, Peter P Pramstaller, Vojin Rakic, Alessandra Rossini, Mahsa Shabani, Dan Jerker B Svantesson, Marta Tomasi, Lars Ursin, Matthias Wjst, et al.

Journal article  |  2019  |  Annals of Internal Medicine

Low-frequency variation in TP53 has large effects on head circumference and intracranial volume

Simon Haworth, Chin Yang Shapland, Caroline Hayward, Bram P Prins, Janine F Felix, Carolina Medina-Gomez, Fernando Rivadeneira, Carol Wang, Tarunveer S Ahluwalia, Martine Vrijheid, Monica Guxens, Jordi Sunyer, Ioanna Tachmazidou, Klaudia Walter, Valentina Iotchkova, Andrew Jackson, Louise Cleal, Jennifer Huffmann, Josine L Min, Laerke Sass, et al.

Journal article  |  2019  |  Nature Communications

Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine

Stephan Beck, Alison M Berner, Graham Bignell, Maggie Bond, Martin J Callanan, Olga Chervova, Lucia Conde, Manuel Corpas, Simone Ecker, Hannah R Elliott, Silvana A Fioramonti, Adrienne M Flanagan, Ricarda Gaentzsch, David Graham, Deirdre Gribbin, Jose Afonso Guerra-Assuncao, Rifat Hamoudi, Vincent Harding, Paul L Harrison, Javier Herrero, et al.

Journal article  |  2018  |  BMC Medical Genomics

The Governance Structure for Data Access in the DIRECT Consortium: An Innovative Medicines Initiative (IMI) Project

Harriet JA Teare, Federico de Masi, Karina Banasik, Anna Barnett, Sanna Herrgard, Bernd Jablonka, Jacqueline WM Postma, Timothy J McDonald, Ian Forgie, Piotr J Chmura, Emil K Rydzka, Ramneek Gupta, Soren Brunak, Ewan Pearson, Jane Kaye

Journal article  |  2018  |  Life Sciences, Society and Policy

Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mech..

Including All Voices in International Data-Sharing Governance

Jane Kaye, Sharon F Terry, Eric Juengst, Sarah Coy, Jennifer R Harris, Don Chalmers, Edward S Dove, Isabelle Budin-Ljosne, Clement Adebamowo, Emilomo Ogbe, Louise Bezuidenhout, Michael Morrison, Joel T Minion, Madeleine J Murtagh, Jusaku Minari, Harriet Teare, Rosario Isasi, Kazuto Kato, Emmanuelle Rial-Sebbag, Patricia Marshall, et al.

Journal article  |  2018  |  Human Genomics

Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facili..

Making the Most of the Waiting Room: Electronic Patient Engagement, a Mixed Methods Study

Victoria Coathup, Teresa Finlay, Harriet JA Teare, Jane Kaye, Matthew South, Fiona E Watt, Raashid Luqmani

Journal article  |  2018  |  DIGITAL HEALTH

The purpose of this study was to explore whether patients with musculoskeletal conditions would agree to use digital technologies ..

Regulating human stem cell research and therapy in low- and middle-income countries: Malaysian perspectives

Mohammad Firdaus Bin Abdul Aziz, Michael Morrison, Jane Kaye

Journal article  |  2018  |  New Genetics and Society

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

Megan Prictor, Harriet Teare, Jane Kaye

Journal article  |  2018  |  Frontiers in Public Health

Participation in biobanks tends to favor certain groups—white, middle-class, more highly-educated—often to the exclusion of others..

Desiderata for Digital Consent in Genomic Research

Carlos Luis Parra-Calderon, Jane Kaye, Alberto Moreno-Conde, Harriet Teare, Francisco Nunez-Benjumea

Journal article  |  2018  |  Journal of Community Genetics

Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with ..

Are 'Pseudonymised' Data always Personal Data? Implications of the GDPR for Administrative Data Research in the UK

Miranda Mourby, Elaine Mackey, Mark Elliot, Heather Gowans, Susan E Wallace, Jessica Bell, Hannah Smith, Stergios Aidinlis, Jane Kaye

Journal article  |  2018  |  Computer Law & Security Review

There has naturally been a good deal of discussion of the forthcoming General Data Protection Regulation. One issue of interest to..

Participant-Centric Initiatives and Medical Research: Scoping Review Protocol

Victoria Coathup, Nao Hamakawa, Teresa Finlay, Jessica Bell, Jane Kaye, Kazuto Kato

Journal article  |  2017  |  JMIR Research Protocols

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

Colin Mitchell, Corrette Ploem, Victoria Chico, Elizabeth Ormondroyd, Alison Hall, Susan Wallace, Michael Fay, Deirdre Goodwin, Jessica Bell, Simon Phillips, Jenny C Taylor, Raoul Hennekam, Jane Kaye

Journal article  |  2017  |  Medical Law International

Genome-wide sequencing technologies are beginning to be used in projects that have both clinical diagnostic and research component..

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

Michael Morrison, Jessica Bell, Carol George, Shawn Harmon, Megan Munsie, Jane Kaye

Journal article  |  2017  |  Regenerative Medicine

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

Douglas Sipp, Timothy Caulfield, Jane Kaye, Jan Barfoot, Clare Blackburn, Sarah Chan, Michele De Luca, Alastair Kent, Christopher McCabe, Megan Munsie, Margaret Sleeboom-Faulkner, Jeremy Sugarman, Esther van Zimmeren, Amy Zarzeczny, John EJ Rasko

Journal article  |  2017  |  Science Translational Medicine

Rare Variant Analysis of Human and Rodent Obesity Genes in Individuals with Severe Childhood Obesity.

Audrey E Hendricks, Elena G Bochukova, Gaëlle Marenne, Julia M Keogh, Neli Atanassova, Rebecca Bounds, Eleanor Wheeler, Vanisha Mistry, Elana Henning, Antje Körner, Dawn Muddyman, Shane McCarthy, Anke Hinney, Johannes Hebebrand, Robert A Scott, Claudia Langenberg, Nick J Wareham, Praveen Surendran, Joanna M Howson, Adam S Butterworth, et al.

Journal article  |  2017  |  Scientific Reports

Obesity is a genetically heterogeneous disorder. Using targeted and whole-exome sequencing, we studied 32 human and 87 rodent obes..

Who owns your DNA?

C Johnston, M Prictor, J Bell, J Kaye, H Teare

Scholarly Contribution to Database/Website  |  2017

When you’re clipping your nails or having a haircut, do you think about who owns those samples of your genetic material? Perhaps y..

Trends and Challenges in Biobanking

J Kaye, J Bell, M Prictor, M Munsie

Book Chapter  |  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

Lydia Forestier-Zhang, Laura Watts, Alison Turner, Harriet Teare, Jane Kaye, Joe Barrett, Cyrus Cooper, Richard Eastell, Paul Wordsworth, Muhammad K Javaid, Rafael Pinedo-Villanueva

Journal article  |  2016  |  Orphanet Journal of Rare Diseases

Personalized assent for pediatric biobanks

Noor AA Giesbertz, Karen Melham, Jane Kaye, Johannes JM van Delden, Annelien L Bredenoord

Journal article  |  2016  |  BMC Medical Ethics

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

Victoria Coathup, Harriet JA Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P Takahashi, Kazuto Kato

Journal article  |  2016  |  BMC Medical Ethics

Precision medicine: drowning in a regulatory soup?

Dianne Nicol, Tania Bubela, Don Chalmers, Jan Charbonneau, Christine Critchley, Joanne Dickinson, Jennifer Fleming, Alex W Hewitt, Jane Kaye, Johnathon Liddicoat, Rebekah McWhirter, Margaret Otlowski, Nola M Ries, Loane Skene, Cameron Stewart, Jennifer Wagner, Nik Zeps

Journal article  |  2016  |  Journal of Law and the Biosciences

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

Don Chalmers, Dianne Nicol, Jane Kaye, Jessica Bell, Alastair V Campbell, Calvin WL Ho, Kazuto Kato, Jusaku Minari, Chih-hsing Ho, Colin Mitchell, Fruzsina Molnar-Gabor, Margaret Otlowski, Daniel Thiel, Stephanie M Fullerton, Tess Whitton

Journal article  |  2016  |  BMC Medical Ethics

Challenges and opportunities for ELSI early career researchers

Jessica Bell, Mirko Ancillotti, Victoria Coathup, Sarah Coy, Tessel Rigter, Travis Tatum, Jasjote Grewal, Faruk Berat Akcesme, Jovana Brkic, Anida Causevic-Ramosevac, Goran Milovanovic, Marianna Nobile, Cristiana Pavlidis, Teresa Finlay, Jane Kaye

Journal article  |  2016  |  BMC Medical Ethics

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

C Mitchell, MC Ploem, RCM Hennekam, J Kaye

Journal article  |  2016  |  Tottels Journal of Professional Negligence

The use of 'next-generation' genetic sequencing technology that allows the sequencing of large parts, or even the entirety, of a p..

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

J Patrick Woolley, Michelle L McGowan, Harriet JA Teare, Victoria Coathup, Jennifer R Fishman, Richard A Settersten, Sigrid Sterckx, Jane Kaye, Eric T Juengst

Journal article  |  2016  |  BMC Medical Ethics

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

Isabelle Budin-Ljosne, Deborah Mascalzoni, Sirpa Soini, Helena Machado, Jane Kaye, Heidi Beate Bentzen, Emmanuelle Rial-Sebbag, Flavio D'Abramo, Michal Witt, Genevieve Schamps, Visnja Katic, Dusanca Krajnovic, Jennifer R Harris

Journal article  |  2016  |  Biopreservation and Biobanking

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

Jane Kaye, Linda Briceno Moraia, Colin Mitchell, Jessica Bell, Jasper Adriaan Bovenberg, Anne-Marie Tasse, Bartha Maria Knoppers

Journal article  |  2016  |  Biopreservation and Biobanking

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

Jane Kaye, Linda Briceno Moraia, Liam Curren, Jessica Bell, Colin Mitchell, Sirpa Soini, Nils Hoppe, Morten Oien, Emmanuelle Rial-Sebbag

Journal article  |  2016  |  Biopreservation and Biobanking

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

Steven McGinn, David Bauer, Thomas Brefort, Liqin Dong, Afaf EI-Sagheer, Abdou Elsharawy, Geraint Evans, Elin Falk-Sorqvist, Michael Forster, Simon Fredriksson, Peter Freeman, Camilla Freitag, Joachim Fritzsche, Spencer Gibson, Mats Gullberg, Marta Gut, Simon Heath, Isabelle Heath-Brun, Andrew J Heron, Johannes Hohlbein, et al.

Journal article  |  2016  |  New Biotechnology

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

Karen Spencer, Caroline Sanders, Edgar A Whitley, David Lund, Jane Kaye, William Gregory Dixon

Journal article  |  2016  |  Journal of Medical Internet Research

Biobank Report: United Kingdom

Jane Kaye, Jessica Bell, Linda Briceno, Colin Mitchell

Journal article  |  2016  |  The Journal of Law, Medicine & Ethics

eRegistries: Electronic registries for maternal and child health

J Frederik Froen, Sonja L Myhre, Michael J Frost, Doris Chou, Garrett Mehl, Lale Say, Socheat Cheng, Ingvild Fjeldheim, Ingrid K Friberg, Steve French, Jagrati V Jani, Jane Kaye, John Lewis, Ane Lunde, Kjersti Morkrid, Victoria Nankabirwa, Linda Nyanchoka, Hollie Stone, Mahima Venkateswaran, Aleena M Wojcieszek, et al.

Journal article  |  2016  |  BMC Pregnancy and Childbirth

Governance Through Privacy, Fairness, and Respect for Individuals.

Dixie B Baker, Jane Kaye, Sharon F Terry

Journal article  |  2016  |  eGEMs

INTRODUCTION: Individuals have a moral claim to be involved in the governance of their personal data. Individuals' rights include ..

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

Nick Webborn, Alun Williams, Mike McNamee, Claude Bouchard, Yannis Pitsiladis, Ildus Ahmetov, Euan Ashley, Nuala Byrne, Silvia Camporesi, Malcolm Collins, Paul Dijkstra, Nir Eynon, Noriyuki Fuku, Fleur C Garton, Nils Hoppe, Soren Holm, Jane Kaye, Vassilis Klissouras, Alejandro Lucia, Kamiel Maase, et al.

Journal article  |  2015  |  British Journal of Sports Medicine

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

Michael Morrison, Christine Klein, Nicole Clemann, David A Collier, John Hardy, Barbara Heisserer, M Zameel Cader, Martin Graf, Jane Kaye

Journal article  |  2015  |  Stem Cell Reviews and Reports

Truncation of POC1A associated with short stature and extreme insulin resistance.

Jian-Hua Chen, Maria Segni, Felicity Payne, Isabel Huang-Doran, Alison Sleigh, Claire Adams, undefined UK10K Consortium, David B Savage, Stephen O'Rahilly, Robert K Semple, Inês Barroso

Journal article  |  2015  |  Journal of Molecular Endocrinology

We describe a female proband with primordial dwarfism, skeletal dysplasia, facial dysmorphism, extreme dyslipidaemic insulin resis..

A global reference for human genetic variation

David M Altshuler, Richard M Durbin, Goncalo R Abecasis, David R Bentley, Aravinda Chakravarti, Andrew G Clark, Peter Donnelly, Evan E Eichler, Paul Flicek, Stacey B Gabriel, Richard A Gibbs, Eric D Green, Matthew E Hurles, Bartha M Knoppers, Jan O Korbel, Eric S Lander, Charles Lee, Hans Lehrach, Elaine R Mardis, Gabor T Marth, et al.

Journal article  |  2015  |  Nature

The UK10K project identifies rare variants in health and disease

Klaudia Walter, Josine L Min, Jie Huang, Lucy Crooks, Yasin Memari, Shane McCarthy, John RB Perry, ChangJiang Xu, Marta Futema, Daniel Lawson, Valentina Iotchkova, Stephan Schiffels, Audrey E Hendricks, Petr Danecek, Rui Li, James Floyd, Louise V Wain, Ines Barroso, Steve E Humphries, Matthew E Hurles, et al.

Journal article  |  2015  |  Nature

Improved imputation of low-frequency and rare variants using the UK10K haplotype reference panel

Jie Huang, Bryan Howie, Shane McCarthy, Yasin Memari, Klaudia Walter, Josine L Min, Petr Danecek, Giovanni Malerba, Elisabetta Trabetti, Hou-Feng Zheng, Giovanni Gambaro, J Brent Richards, Richard Durbin, Nicholas J Timpson, Jonathan Marchini, Nicole Soranzo

Journal article  |  2015  |  Nature Communications

Marking Shifts in Human Research Ethics in the Development of Biobanking

Don Chalmers, Michael Burgess, Kelly Edwards, Jane Kaye, Eric M Meslin, Dianne Nicol

Journal article  |  2015  |  Public Health Ethics

Whole-genome sequence-based analysis of thyroid function.

Peter N Taylor, Eleonora Porcu, Shelby Chew, Purdey J Campbell, Michela Traglia, Suzanne J Brown, Benjamin H Mullin, Hashem A Shihab, Josine Min, Klaudia Walter, Yasin Memari, Jie Huang, Michael R Barnes, John P Beilby, Pimphen Charoen, Petr Danecek, Frank Dudbridge, Vincenzo Forgetta, Celia Greenwood, Elin Grundberg, et al.

Journal article  |  2015  |  Nature Communications

Normal thyroid function is essential for health, but its genetic architecture remains poorly understood. Here, for the heritable t..

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

Jane Kaye, Edgar A Whitley, David Lund, Michael Morrison, Harriet Teare, Karen Melham

Journal article  |  2015  |  European Journal of Human Genetics

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Jane Kaye

Book Chapter  |  2015

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

Harriet JA Teare, Michael Morrison, Edgar A Whitley, Jane Kaye

Journal article  |  2015  |  DIGITAL HEALTH

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

Jane Kaye, Dawn Muddyman, Carol Smee, Karen Kennedy, Jessica Bell, undefined UK10K

Journal article  |  2015  |  Life Sciences, Society and Policy

Innovations in information technologies have facilitated the development of new styles of research networks and forms of governanc..

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

Jusaku Minari, Harriet Teare, Colin Mitchell, Jane Kaye, Kazuto Kato

Journal article  |  2014  |  Genome Medicine

CAN I ACCESS MY PERSONAL GENOME? THE CURRENT LEGAL POSITION IN THE UK

Jane Kaye, Nadja Kanellopoulou, Naomi Hawkins, Heather Gowans, Liam Curren, Karen Melham

Journal article  |  2014  |  Medical Law Review

A rare variant in APOC3 is associated with plasma triglyceride and VLDL levels in Europeans.

Nicholas J Timpson, Klaudia Walter, Josine L Min, Ioanna Tachmazidou, Giovanni Malerba, So-Youn Shin, Lu Chen, Marta Futema, Lorraine Southam, Valentina Iotchkova, Massimiliano Cocca, Jie Huang, Yasin Memari, Shane McCarthy, Petr Danecek, Dawn Muddyman, Massimo Mangino, Cristina Menni, John RB Perry, Susan M Ring, et al.

Journal article  |  2014  |  Nature Communications

The analysis of rich catalogues of genetic variation from population-based sequencing provides an opportunity to screen for functi..

Managing clinically significant findings in research: the UK10K example

Jane Kaye, Matthew Hurles, Heather Griffin, Jasote Grewal, Martin Bobrow, Nic Timpson, Carol Smee, Patrick Bolton, Richard Durbin, Stephanie Dyke, David Fitzpatrick, Karen Kennedy, Alastair Kent, Dawn Muddyman, Francesco Muntoni, Lucy F Raymond, Robert Semple, Tim Spector

Journal article  |  2014  |  European Journal of Human Genetics

Integrating sequence and array data to create an improved 1000 Genomes Project haplotype reference panel

Olivier Delaneau, Jonathan Marchini

Journal article  |  2014  |  Nature Communications

Restore public trust in care.data project

Colin Mitchell, Linda Briceno Moraia, Jane Kaye

Journal article  |  2014  |  Nature

Spies, data and research

Linda Briceno Moraia, Jane Kaye

Journal article  |  2014  |  EMBO reports

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

Timothy Caulfield, Sarah Burningham, Yann Joly, Zubin Master, Mahsa Shabani, Pascal Borry, Allan Becker, Michael Burgess, Kathryn Calder, Christine Critchley, Kelly Edwards, Stephanie M Fullerton, Herbert Gottweis, Robyn Hyde-Lay, Judy Illes, Rosario Isasi, Kazuto Kato, Jane Kaye, Bartha Knoppers, John Lynch, et al.

Journal article  |  2014  |  Journal of Law and the Biosciences

SHARING MEDICAL RECORD DATA A dynamic model of patient consent to sharing of medical record data

William G Dixon, Karen Spencer, Hawys Williams, Caroline Sanders, David Lund, Edgar A Whitley, Jane Kaye

Journal article  |  2014  |  BMJ

Data sharing policy design for consortia: challenges for sustainability

Jane Kaye, Naomi Hawkins

Journal article  |  2014  |  Genome Medicine

The evolution of withdrawal: negotiating research relationships in biobanking.

Karen Melham, Linda Briceno Moraia, Colin Mitchell, Michael Morrison, Harriet Teare, Jane Kaye

Journal article  |  2014  |  Life Sciences, Society and Policy

The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nurembur..

A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom

LB Moraia, J Kaye, AM Tasse, BM Knoppers, C Mitchell, S Soini, N Hoppe, SE Wallace, M Øien

Journal article  |  2014  |  Medical Law International

Building a data sharing model for global genomic research

Patricia Kosseim, Edward S Dove, Carman Baggaley, Eric M Meslin, Fred H Cate, Jane Kaye, Jennifer R Harris, Bartha M Knoppers

Journal article  |  2014  |  Genome Biology

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

Dawn Muddyman, Carol Smee, Heather Griffin, Jane Kaye

Journal article  |  2013  |  Genome Medicine

A P3G generic access agreement for population genomic studies

Bartha Maria Knoppers, Rex L Chisholm, Jane Kaye, David Cox, Adrian Thorogood, Paul Burton, Anthony J Brookes, Isabel Fortier, Pat Goodwin, Jennifer R Harris, Kristian Hveem, Alistair Kent, Julian Little, Peter HJ Riegman, Samuli Ripatti, Ronald P Stolk

Journal article  |  2013  |  Nature Biotechnology

An integrated map of genetic variation from 1,092 human genomes

David M Altshuler, Richard M Durbin, Goncalo R Abecasis, David R Bentley, Aravinda Chakravarti, Andrew G Clark, Peter Donnelly, Evan E Eichler, Paul Flicek, Stacey B Gabriel, Richard A Gibbs, Eric D Green, Matthew E Hurles, Bartha M Knoppers, Jan O Korbel, Eric S Lander, Charles Lee, Hans Lehrach, Elaine R Mardis, Gabor T Marth, et al.

Journal article  |  2012  |  Nature

Toward a roadmap in global biobanking for health

Jennifer R Harris, Paul Burton, Bartha Maria Knoppers, Klaus Lindpaintner, Marianna Bledsoe, Anthony J Brookes, Isabelle Budin-Ljosne, Rex Chisholm, David Cox, Mylene Deschenes, Isabel Fortier, Pierre Hainaut, Robert Hewitt, Jane Kaye, Jan-Eric Litton, Andres Metspalu, Bill Ollier, Lyle J Palmer, Aarno Palotie, Markus Pasterk, et al.

Journal article  |  2012  |  European Journal of Human Genetics

Ownership of biomedical information in biobanks

N Hawkins, N Kanellopoulou, J Kaye, K Melham, P Boddington, L Curren, H Gowans

Book Chapter  |  2012

ELSI challenges and strategies of national biobank infrastructures

I Budin-Ljøne, JR Harris, J Kaye, BM Knoppers, AM Tassé, E Bravo, A Cambon-Thomsen, M Eriksson, KO Kyvik, JE Litton, M Perola, E Rial-Sebbag

Journal article  |  2012  |  Norsk Epidemiologi

National biobank infrastructures are now being implemented in several European countries. Individually, biobanks are invaluable as..

Embedding biobanks as tools for personalised medicine

J Kaye

Journal article  |  2012  |  Norsk Epidemiologi

Many governments are seeking to improve the translation of medical research innovation by developing mechanisms to aid the flow of..

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

Pascal Borry, Rachel E van Hellemondt, Dominique Sprumont, Camilla Fittipaldi Duarte Jales, Emmanuelle Rial-Sebbag, Tade Matthias Spranger, Liam Curren, Jane Kaye, Herman Nys, Heidi Howard

Journal article  |  2012  |  European Journal of Human Genetics

ELSI 2.0 for Genomics and Society

Jane Kaye, Eric M Meslin, Bartha M Knoppers, Eric T Juengst, Mylene Deschenes, Anne Cambon-Thomsen, Donald Chalmers, Jantina De Vries, Kelly Edwards, Nils Hoppe, Alastair Kent, Clement Adebamowo, Patricia Marshall, Kazuto Kato

Journal article  |  2012  |  Science

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

Jane Kaye, Liam Curren, Nick Anderson, Kelly Edwards, Stephanie M Fullerton, Nadja Kanellopoulou, David Lund, Daniel G MacArthur, Deborah Mascalzoni, James Shepherd, Patrick L Taylor, Sharon F Terry, Stefan F Winter

Journal article  |  2012  |  Nature Reviews Genetics

Governing Biobanks Understanding the Interplay between Law and Practice

Jane Kaye, Susan MC Gibbons, Catherine Heeney, Andrew Smart

Book  |  2012

O LAY A proper foundation for understanding and critically evaluating the current governance framework applicable to biobanks in ..

Consent and Research Governance in Biobanks: Evidence from Focus Groups with Medical Researchers

EA Whitley, N Kanellopoulou, J Kaye

Journal article  |  2012  |  Public Health Genomics

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Jane Kaye

Journal article  |  2012  |  Annual Review of Genomics and Human Genetics

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

Paula Boddington, Liam Curren, Jane Kaye, Nadja Kanellopoulou, Karen Melham, Heather Gowans, Naomi Hawkins

Journal article  |  2011  |  European Journal of Health Law

Consent forms are the principal method for obtaining informed consent from biomedical research participants. The significance of t..

From single biobanks to international networks: developing e-governance

Jane Kaye

Journal article  |  2011  |  Human Genetics

From consent to institutions: Designing adaptive governance for genomic biobanks

Kieran C O'Doherty, Michael M Burgess, Kelly Edwards, Richard P Gallagher, Alice K Hawkins, Jane Kaye, Veronica McCaffrey, David E Winickoff

Journal article  |  2011  |  Social Science & Medicine

From genomic databases to translation: a call to action

Bartha Maria Knoppers, Jennifer R Harris, Paul R Burton, Madeleine Murtagh, David Cox, Mylene Deschenes, Isabel Fortier, Thomas J Hudson, Jane Kaye, Klaus Lindpaintner

Journal article  |  2011  |  Journal of Medical Ethics

Towards a data sharing Code of Conduct for international genomic research

Bartha Maria Knoppers, Jennifer R Harris, Anne Marie Tasse, Isabelle Budin-Ljosne, Jane Kaye, Mylene Deschenes, Ma'n H Zawati

Journal article  |  2011  |  Genome Medicine

Assessing the Privacy Risks of Data Sharing in Genomics

C Heeney, N Hawkins, J de Vries, P Boddington, J Kaye

Journal article  |  2011  |  Public Health Genomics