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Including all voices in international data-sharing governance.
Published in:
Human Genomics, 2018, v. 12, p. 1, doi. 10.1186/s40246-018-0143-9
By:
- Kaye, Jane;
- Terry, Sharon F.;
- Juengst, Eric;
- Coy, Sarah;
- Harris, Jennifer R.;
- Chalmers, Don;
- Dove, Edward S.;
- Budin-Ljøsne, Isabelle;
- Adebamowo, Clement;
- Ogbe, Emilomo;
- Bezuidenhout, Louise;
- Morrison, Michael;
- Minion, Joel T.;
- Murtagh, Madeleine J.;
- Minari, Jusaku;
- Teare, Harriet;
- Isasi, Rosario;
- Kato, Kazuto;
- Rial-Sebbag, Emmanuelle;
- Marshall, Patricia
Publication type:
Article
Biomodifying the 'natural': from Adaptive Regulation to Adaptive Societal Governance.
Published in:
Journal of Law & the Biosciences, 2022, v. 9, n. 1, p. 1, doi. 10.1093/jlb/lsac018
By:
- Mourby, Miranda;
- Bell, Jessica;
- Morrison, Michael;
- Faulkner, Alex;
- Li, Phoebe;
- Bicudo, Edison;
- Webster, Andrew;
- Kaye, Jane
Publication type:
Article
Precision medicine: drowning in a regulatory soup?
Published in:
Journal of Law & the Biosciences, 2016, v. 3, n. 2, p. 281, doi. 10.1093/jlb/lsw018
By:
- Nicol, Dianne;
- Bubela, Tania;
- Chalmers, Don;
- Charbonneau, Jan;
- Critchley, Christine;
- Dickinson, Joanne;
- Fleming, Jennifer;
- Hewitt, AlexW.;
- Kaye, Jane;
- Liddicoat, Johnathon;
- McWhirter, Rebekah;
- Otlowski, Margaret;
- Ries, Nola M.;
- Skene, Loane;
- Stewart, Cameron;
- Wagner, Jennifer;
- Zeps, Nik
Publication type:
Article
Privacy, Fairness, and Respect for Individuals.
Published in:
eGEMS (Generating Evidence & Methods to Improve Patient Outcomes), 2016, v. 4, n. 2, p. 1, doi. 10.13063/2327-9214.1207
By:
- Baker, Dixie B.;
- Kaye, Jane;
- Leg, Grad. Dip.;
- Terry, Sharon F.
Publication type:
Article
Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia.
Published in:
Orphanet Journal of Rare Diseases, 2016, v. 11, p. 1, doi. 10.1186/s13023-016-0538-4
By:
- Forestier-Zhang, Lydia;
- Watts, Laura;
- Turner, Alison;
- Teare, Harriet;
- Kaye, Jane;
- Barrett, Joe;
- Cooper, Cyrus;
- Eastell, Richard;
- Wordsworth, Paul;
- Javaid, Muhammad K.;
- Pinedo-Villanueva, Rafael
Publication type:
Article
Patent power in biomedical innovation: Technology governance in biomodifying technologies.
Published in:
Journal of World Intellectual Property, 2022, v. 25, n. 2, p. 473, doi. 10.1111/jwip.12237
By:
- Bicudo, Edison;
- Morrison, Michael;
- Li, Phoebe;
- Faulkner, Alex;
- Webster, Andrew;
- Mourby, Miranda;
- Kaye, Jane
Publication type:
Article
POPULATION GENETIC DATABASES: A COMPARATIVE ANALYSIS OF THE LAW IN ICELAND, SWEDEN, ESTONIA AND THE UK.
Published in:
TRAMES: A Journal of the Humanities & Social Sciences, 2004, v. 8, n. 1/2, p. 15, doi. 10.3176/tr.2004.1/2.02
By:
- Kaye, Jane;
- Helgason, Hordur Helgi;
- Nõmper, Ants;
- Sild, Tarmo;
- Wendel, Lotta
Publication type:
Article
Marking Shifts in Human Research Ethics in the Development of Biobanking.
Published in:
Public Health Ethics, 2015, v. 8, n. 1, p. 63, doi. 10.1093/phe/phu023
By:
- Chalmers, Don;
- Burgess, Michael;
- Edwards, Kelly;
- Kaye, Jane;
- Meslin, Eric M.;
- Nicol, Dianne
Publication type:
Article
A P3G generic access agreement for population genomic studies.
Published in:
Nature Biotechnology, 2013, v. 31, n. 5, p. 384, doi. 10.1038/nbt.2567
By:
- Knoppers, Bartha Maria;
- Chisholm, Rex L;
- Kaye, Jane;
- Cox, David;
- Thorogood, Adrian;
- Burton, Paul;
- Brookes, Anthony J;
- Fortier, Isabel;
- Goodwin, Pat;
- Harris, Jennifer R;
- Hveem, Kristian;
- Kent, Alistair;
- Little, Julian;
- Riegman, Peter H J;
- Ripatti, Samuli;
- Stolk, Ronald P
Publication type:
Article
Patents and translational research in genomics.
Published in:
Nature Biotechnology, 2007, v. 25, n. 7, p. 739, doi. 10.1038/nbt0707-739
By:
- Kaye, Jane;
- Hawkins, Naomi;
- Taylor, Jenny
Publication type:
Article
Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.
Published in:
2017
By:
- Budin-Ljøsne, Isabelle;
- Teare, Harriet J. A.;
- Kaye, Jane;
- Beck, Stephan;
- Bentzen, Heidi Beate;
- Caenazzo, Luciana;
- Collett, Clive;
- D'Abramo, Flavio;
- Felzmann, Heike;
- Finlay, Teresa;
- Javaid, Muhammad Kassim;
- Jones, Erica;
- Katić, Višnja;
- Simpson, Amy;
- Mascalzoni, Deborah
Publication type:
journal article
Personalized assent for pediatric biobanks.
Published in:
BMC Medical Ethics, 2016, v. 17, p. 1, doi. 10.1186/s12910-016-0142-0
By:
- Giesbertz, Noor A. A.;
- Melham, Karen;
- Kaye, Jane;
- van Delden, Johannes J. M.;
- Bredenoord, Annelien L.
Publication type:
Article
Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.
Published in:
2016
By:
- Coathup, Victoria;
- Teare, Harriet J. A.;
- Jusaku Minari;
- Go Yoshizawa;
- Kaye, Jane;
- Takahashi, Masanori P.;
- Kazuto Kato;
- Minari, Jusaku;
- Yoshizawa, Go;
- Kato, Kazuto
Publication type:
journal article
Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.
Published in:
2016
By:
- Chalmers, Don;
- Nicol, Dianne;
- Kaye, Jane;
- Bell, Jessica;
- Campbell, Alastair V.;
- Ho, Calvin W. L.;
- Kazuto Kato;
- Minari, Jusaku;
- Chih-hsing Ho;
- Mitchell, Colin;
- Molnár-Gábor, Fruzsina;
- Otlowski, Margaret;
- Thiel, Daniel;
- Fullerton, Stephanie M.;
- Whitton, Tess;
- Kato, Kazuto;
- Ho, Chih-Hsing
Publication type:
journal article
Challenges and opportunities for ELSI early career researchers.
Published in:
2016
By:
- Bell, Jessica;
- Ancillotti, Mirko;
- Coathup, Victoria;
- Coy, Sarah;
- Rigter, Tessel;
- Tatum, Travis;
- Grewal, Jasjote;
- Berat Akcesme, Faruk;
- Brkic, Jovana;
- Causevic-Ramosevac, Anida;
- Milovanovic, Goran;
- Nobile, Marianna;
- Pavlidis, Cristiana;
- Finlay, Teresa;
- Kaye, Jane;
- Akcesme, Faruk Berat;
- Brkić, Jovana;
- ELSI2.0
Publication type:
journal article
Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.
Published in:
2016
By:
- Woolley, J. Patrick;
- McGowan, Michelle L.;
- Teare, Harriet J. A.;
- Coathup, Victoria;
- Fishman, Jennifer R.;
- Settersten Jr., Richard A.;
- Sterckx, Sigrid;
- Kaye, Jane;
- Juengst, Eric T.;
- Settersten, Richard A Jr
Publication type:
journal article
Spies, data and research.
Published in:
EMBO Reports, 2014, v. 15, n. 3, p. 200, doi. 10.1002/embr.201338387
By:
- Moraia, Linda Briceño;
- Kaye, Jane
Publication type:
Article
From patients to partners: participant-centric initiatives in biomedical research.
Published in:
Nature Reviews Genetics, 2012, v. 13, n. 5, p. 371, doi. 10.1038/nrg3218
By:
- Kaye, Jane;
- Curren, Liam;
- Anderson, Nick;
- Edwards, Kelly;
- Fullerton, Stephanie M.;
- Kanellopoulou, Nadja;
- Lund, David;
- MacArthur, Daniel G.;
- Mascalzoni, Deborah;
- Shepherd, James;
- Taylor, Patrick L.;
- Terry, Sharon F.;
- Winter, Stefan F.
Publication type:
Article
Data sharing in genomics--re-shaping scientific practice.
Published in:
2009
By:
- Kaye, Jane;
- Heeney, Catherine;
- Hawkins, Naomi;
- de Vries, Jantina;
- Boddington, Paula
Publication type:
research
From single biobanks to international networks: developing e-governance.
Published in:
Human Genetics, 2011, v. 130, n. 3, p. 377, doi. 10.1007/s00439-011-1063-0
By:
- Kaye, Jane
Publication type:
Article
Making the most of the waiting room: Electronic patient engagement, a mixed methods study.
Published in:
Digital Health, 2018, v. 4, p. 1, doi. 10.1177/2055207617751304
By:
- Coathup, Victoria;
- Finlay, Teresa;
- Teare, Harriet J.A.;
- Kaye, Jane;
- South, Matthew;
- Watt, Fiona E.;
- Luqmani, Raashid
Publication type:
Article
Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.
Published in:
Digital Health, 2015, v. 1, p. 1, doi. 10.1177/2055207615605644
By:
- Teare, Harriet J. A.;
- Morrison, Michael;
- Whitley, Edgar A.;
- Kaye, Jane
Publication type:
Article
Dynamic consent: a patient interface for twenty-first century research networks.
Published in:
European Journal of Human Genetics, 2015, v. 23, n. 2, p. 141, doi. 10.1038/ejhg.2014.71
By:
- Kaye, Jane;
- Whitley, Edgar A;
- Lund, David;
- Morrison, Michael;
- Teare, Harriet;
- Melham, Karen
Publication type:
Article
Managing clinically significant findings in research: the UK10K example.
Published in:
European Journal of Human Genetics, 2014, v. 22, n. 9, p. 1100, doi. 10.1038/ejhg.2013.290
By:
- Kaye, Jane;
- Hurles, Matthew;
- Griffin, Heather;
- Grewal, Jasote;
- Bobrow, Martin;
- Timpson, Nic;
- Smee, Carol;
- Bolton, Patrick;
- Durbin, Richard;
- Dyke, Stephanie;
- Fitzpatrick, David;
- Kennedy, Karen;
- Kent, Alastair;
- Muddyman, Dawn;
- Muntoni, Francesco;
- Raymond, Lucy F;
- Semple, Robert;
- Spector, Tim
Publication type:
Article
Toward a roadmap in global biobanking for health.
Published in:
European Journal of Human Genetics, 2012, v. 20, n. 11, p. 1105, doi. 10.1038/ejhg.2012.96
By:
- Harris, Jennifer R;
- Burton, Paul;
- Knoppers, Bartha Maria;
- Lindpaintner, Klaus;
- Bledsoe, Marianna;
- Brookes, Anthony J;
- Budin-Ljøsne, Isabelle;
- Chisholm, Rex;
- Cox, David;
- Deschênes, Mylène;
- Fortier, Isabel;
- Hainaut, Pierre;
- Hewitt, Robert;
- Kaye, Jane;
- Litton, Jan-Eric;
- Metspalu, Andres;
- Ollier, Bill;
- Palmer, Lyle J;
- Palotie, Aarno;
- Pasterk, Markus
Publication type:
Article
Legislation on direct-to-consumer genetic testing in seven European countries.
Published in:
European Journal of Human Genetics, 2012, v. 20, n. 7, p. 715, doi. 10.1038/ejhg.2011.278
By:
- Borry, Pascal;
- van Hellemondt, Rachel E;
- Sprumont, Dominique;
- Jales, Camilla Fittipaldi Duarte;
- Rial-Sebbag, Emmanuelle;
- Spranger, Tade Matthias;
- Curren, Liam;
- Kaye, Jane;
- Nys, Herman;
- Howard, Heidi
Publication type:
Article
Ethical implications of the use of whole genome methods in medical research.
Published in:
European Journal of Human Genetics, 2010, v. 18, n. 4, p. 398, doi. 10.1038/ejhg.2009.191
By:
- Kaye, Jane;
- Boddington, Paula;
- de Vries, Jantina;
- Hawkins, Naomi;
- Melham, Karen
Publication type:
Article
Do we need a uniform regulatory system for biobanks across Europe?
Published in:
European Journal of Human Genetics, 2006, v. 14, n. 2, p. 245, doi. 10.1038/sj.ejhg.5201530
By:
- Kaye, Jane
Publication type:
Article
eRegistries: governance for electronic maternal and child health registries.
Published in:
BMC Pregnancy & Childbirth, 2016, v. 16, p. 1, doi. 10.1186/s12884-016-1063-0
By:
- Myhre, Sonja L.;
- Kaye, Jane;
- Bygrave, Lee A.;
- Aanestad, Margunn;
- Ghanem, Buthaina;
- Mechael, Patricia;
- Frøen, J. Frederik
Publication type:
Article
Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review.
Published in:
2020
By:
- Hamakawa, Nao;
- Nakano, Rumiko;
- Kogetsu, Atsushi;
- Coathup, Victoria;
- Kaye, Jane;
- Yamamoto, Beverley Anne;
- Kato, Kazuto
Publication type:
journal article
Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.
Published in:
Journal of Medical Internet Research, 2017, v. 19, n. 12, p. 1, doi. 10.2196/resprot.7407
By:
- Coathup, Victoria;
- Finlay, Teresa;
- Bell, Jessica;
- Kaye, Jane;
- Hamakawa, Nao;
- Kato, Kazuto
Publication type:
Article
Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.
Published in:
2016
By:
- Spencer, Karen;
- Sanders, Caroline;
- Whitley, Edgar A.;
- Lund, David;
- Kaye, Jane;
- Dixon, William Gregory
Publication type:
journal article
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Workers in Child Safeguarding Scenarios.
Published in:
2020
By:
- Retzer, Ameeta;
- Kaye, Jane;
- Gray, Ron
Publication type:
Correction Notice
A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children's Social Workers in Child Safeguarding Scenarios.
Published in:
British Journal of Social Work, 2020, v. 50, n. 4, p. 1185, doi. 10.1093/bjsw/bcz076
By:
- Retzer, Ameeta;
- Kaye, Jane;
- Gray, Ron
Publication type:
Article
ELSI challenges and strategies of national biobank infrastructures.
Published in:
Journal of Management & Public Policy, 2012, p. 155
By:
- Budin-Ljøsne, Isabelle;
- Harris, Jennifer R.;
- Kaye, Jane;
- Knoppers, Bartha Maria;
- Tassé, Anne Marie;
- Bravo, Elena;
- Cambon-Thomsen, Anne;
- Eriksson, Mikael;
- Kyvik, Kirsten Ohm;
- Litton, Jan-Eric;
- Perola, Markus;
- Rial-Sebbag, Emmanuelle
Publication type:
Article
Embedding biobanks as tools for personalised medicine.
Published in:
Journal of Management & Public Policy, 2012, p. 169
By:
- Kaye, Jane
Publication type:
Article
Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.
Published in:
Journal of Law, Medicine & Ethics, 2020, v. 48, n. 1, p. 205, doi. 10.1177/1073110520917012
By:
- Prictor, Megan;
- Huebner, Sharon;
- Teare, Harriet J.A.;
- Burchill, Luke;
- Kaye, Jane;
- Wolf, Susan M.;
- Clayton, Ellen Wright;
- Lawrenz, Frances
Publication type:
Article
Biobank Report: United Kingdom.
Published in:
Journal of Law, Medicine & Ethics, 2016, v. 44, n. 1, p. 96, doi. 10.1177/1073110516644202
By:
- Kaye, Jane;
- Bell, Jessica;
- Briceno, Linda;
- Mitchell, Colin
Publication type:
Article
Marketing of unproven stem cell-based interventions: A call to action.
Published in:
Science Translational Medicine, 2017, p. 1, doi. 10.1126/scitranslmed.aag0426
By:
- Sipp, Douglas;
- Caulfield, Timothy;
- Kaye, Jane;
- Barfoot, JanQ;
- Blackburn, Clare;
- Chan, Sarah;
- De Luca, Michele;
- Kent, Alastair;
- McCabe, Christopher;
- Munsie, Megan;
- Sleeboom-Faulkner, Margaret;
- Sugarman, Jeremy;
- van Zimmeren, Esther;
- Zarzeczny, Amy;
- Rasko, John E. J.
Publication type:
Article
Building a data sharing model for global genomic research.
Published in:
Genome Biology, 2014, v. 15, n. 7, p. 430, doi. 10.1186/s13059-014-0430-2
By:
- Kosseim, Patricia;
- Dove, Edward S.;
- Baggaley, Carman;
- Meslin, Eric M.;
- Cate, Fred H.;
- Kaye, Jane;
- Harris, Jennifer R.;
- Knoppers, Bartha M.
Publication type:
Article
Embedding biobanks as tools for personalised medicine.
Published in:
Norsk Epidemiologi, 2012, v. 21, n. 2, p. 169, doi. 10.5324/nje.v21i2.1490
By:
- Kaye, Jane
Publication type:
Article
ELSI challenges and strategies of national biobank infrastructures.
Published in:
Norsk Epidemiologi, 2012, v. 21, n. 2, p. 155
By:
- Budin-Ljøsne, Isabelle;
- Harris, Jennifer R.;
- Kaye, Jane;
- Knoppers, Bartha Maria;
- Tassé, Anne Marie;
- Bravo, Elena;
- Cambon-Thomsen, Anne;
- Eriksson, Mikael;
- Kyvik, Kirsten Ohm;
- Litton, Jan-Eric;
- Perola, Markus;
- Rial-Sebbag, Emmanuelle
Publication type:
Article
A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom.
Published in:
Medical Law International, 2014, v. 14, n. 4, p. 187, doi. 10.1177/0968533215571956
By:
- Moraia, Linda Briceño;
- Kaye, Jane;
- Tasse, Anne Marie;
- Knoppers, Bartha M.;
- Mitchell, Colin;
- Soini, Sirpa;
- Hoppe, Nils;
- Wallace, Susan E.;
- Øien, Morten
Publication type:
Article
Exploring the potential duty of care in clinical genomics under UK law.
Published in:
Medical Law International, 2017, v. 17, n. 3, p. 158, doi. 10.1177/0968533217721966
By:
- Mitchell, Colin;
- Ploem, Corrette;
- Chico, Victoria;
- Ormondroyd, Elizabeth;
- Hall, Alison;
- Wallace, Susan;
- Fay, Michael;
- Goodwin, Deirdre;
- Bell, Jessica;
- Phillips, Simon;
- Taylor, Jenny C.;
- Hennekam, Raoul;
- Kaye, Jane
Publication type:
Article
BROAD CONSENT IN BIOBANKING: REFLECTIONS ON SEEMINGLY INSURMOUNTABLE DILEMMAS.
Published in:
Medical Law International, 2009, v. 10, n. 2, p. 85, doi. 10.1177/096853320901000201
By:
- CAULFIELD, TIMOTHY;
- KAYE, JANE
Publication type:
Article
MAPPING THE REGULATORY SPACE FOR GENETIC DATABASES AND BIOBANKS IN ENGLAND AND WALES.
Published in:
Medical Law International, 2008, v. 9, n. 2, p. 111, doi. 10.1177/096853320800900202
By:
- Kaye, Jane;
- Gibbons, Susan M. C.
Publication type:
Article
eRegistries: Electronic registries for maternal and child health.
Published in:
2016
By:
- Frøen, J Frederik;
- Myhre, Sonja L;
- Frost, Michael J;
- Chou, Doris;
- Mehl, Garrett;
- Say, Lale;
- Cheng, Socheat;
- Fjeldheim, Ingvild;
- Friberg, Ingrid K;
- French, Steve;
- Jani, Jagrati V;
- Kaye, Jane;
- Lewis, John;
- Lunde, Ane;
- Mørkrid, Kjersti;
- Nankabirwa, Victoria;
- Nyanchoka, Linda;
- Stone, Hollie;
- Venkateswaran, Mahima;
- Wojcieszek, Aleena M
Publication type:
journal article
Survey of hereditary angioedema episodes and quality of life impairment through a patient-participatory registry.
Published in:
Journal of Cutaneous Immunology & Allergy, 2024, p. 1, doi. 10.3389/jcia.2024.12626
By:
- Satoshi Morioke;
- Tatsuki Aikyo;
- Akio Tanaka;
- Daiki Matsubara;
- Ryo Saito;
- Kazumasa Iwamoto;
- Chisato Yamasaki;
- Atsushi Kogetsu;
- Nao Hamakawa;
- Moeko Isono;
- Yamamoto, Beverley Anne;
- Yasushi Matsumura;
- Toshihiro Takeda;
- Shiro Manabe;
- Javaid, Muhammad Kassim;
- Barrett, Joe;
- Gray, Nathanael;
- Kaye, Jane;
- Kazuto Kato;
- Michihiro Hide
Publication type:
Article
Dynamic Consent: An Evaluation and Reporting Framework.
Published in:
Journal of Empirical Research on Human Research Ethics, 2020, v. 15, n. 3, p. 175, doi. 10.1177/1556264619887073
By:
- Prictor, Megan;
- Lewis, Megan A.;
- Newson, Ainsley J.;
- Haas, Matilda;
- Baba, Sachiko;
- Kim, Hannah;
- Kokado, Minori;
- Minari, Jusaku;
- Molnár-Gábor, Fruzsina;
- Yamamoto, Beverley;
- Kaye, Jane;
- Teare, Harriet J. A.
Publication type:
Article
Research Ethics Recommendations for Whole-Genome Research: Consensus Statement.
Published in:
PLoS Biology, 2008, v. 6, n. 3, p. e73, doi. 10.1371/journal.pbio.0060073
By:
- Caulfield, Timothy;
- McGuire, Amy L;
- Cho, Mildred;
- Buchanan, Janet A;
- Burgess, Michael M;
- Danilczyk, Ursula;
- Diaz, Christina M;
- Fryer-Edwards, Kelly;
- Green, Shane K;
- Hodosh, Marc A;
- Juengst, Eric T;
- Kaye, Jane;
- Kedes, Laurence;
- Knoppers, Bartha Maria;
- Lemmens, Trudo;
- Meslin, Eric M;
- Murphy, Juli;
- Nussbaum, Robert L;
- Otlowski, Margaret;
- Pullman, Daryl
Publication type:
Article

Found: 59