Isabelle Budin-Ljøsne, Harriet J A Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D'Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson, Deborah Mascalzoni. BMC Med Ethics 2017
Times Cited: 61
Times Cited: 61
Times Cited
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Dynamic consent: a patient interface for twenty-first century research networks.
Jane Kaye, Edgar A Whitley, David Lund, Michael Morrison, Harriet Teare, Karen Melham. Eur J Hum Genet 2015
Jane Kaye, Edgar A Whitley, David Lund, Michael Morrison, Harriet Teare, Karen Melham. Eur J Hum Genet 2015
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Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?
Kristin Solum Steinsbekk, Bjørn Kåre Myskja, Berge Solberg. Eur J Hum Genet 2013
Kristin Solum Steinsbekk, Bjørn Kåre Myskja, Berge Solberg. Eur J Hum Genet 2013
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Broad Consent for Research With Biological Samples: Workshop Conclusions.
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Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M Fullerton, Hank Greely, Mats G Hansson, Sara Hull, Scott Kim,[...]. Am J Bioeth 2015
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Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.
Hawys Williams, Karen Spencer, Caroline Sanders, David Lund, Edgar A Whitley, Jane Kaye, William G Dixon. JMIR Med Inform 2015
Hawys Williams, Karen Spencer, Caroline Sanders, David Lund, Edgar A Whitley, Jane Kaye, William G Dixon. JMIR Med Inform 2015
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Identifying personal genomes by surname inference.
Melissa Gymrek, Amy L McGuire, David Golan, Eran Halperin, Yaniv Erlich. Science 2013
Melissa Gymrek, Amy L McGuire, David Golan, Eran Halperin, Yaniv Erlich. Science 2013
13
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,[...]. Nat Rev Genet 2012
Jane Kaye, Liam Curren, Nick Anderson, Kelly Edwards, Stephanie M Fullerton, Nadja Kanellopoulou, David Lund, Daniel G MacArthur, Deborah Mascalzoni, James Shepherd,[...]. Nat Rev Genet 2012
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Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research.
Natalie T Boutin, Kathleen Mathieu, Alison G Hoffnagle, Nicole L Allen, Victor M Castro, Megan Morash, P Pearl O'Rourke, Elizabeth L Hohmann, Neil Herring, Lynn Bry,[...]. J Pers Med 2016
Natalie T Boutin, Kathleen Mathieu, Alison G Hoffnagle, Nicole L Allen, Victor M Castro, Megan Morash, P Pearl O'Rourke, Elizabeth L Hohmann, Neil Herring, Lynn Bry,[...]. J Pers Med 2016
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Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.
Harriet Ja Teare, Michael Morrison, Edgar A Whitley, Jane Kaye. Digit Health 2015
Harriet Ja Teare, Michael Morrison, Edgar A Whitley, Jane Kaye. Digit Health 2015
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Informed consent in genomics and genetic research.
Amy L McGuire, Laura M Beskow. Annu Rev Genomics Hum Genet 2010
Amy L McGuire, Laura M Beskow. Annu Rev Genomics Hum Genet 2010
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The FAIR Guiding Principles for scientific data management and stewardship.
Mark D Wilkinson, Michel Dumontier, I Jsbrand Jan Aalbersberg, Gabrielle Appleton, Myles Axton, Arie Baak, Niklas Blomberg, Jan-Willem Boiten, Luiz Bonino da Silva Santos, Philip E Bourne,[...]. Sci Data 2016
Mark D Wilkinson, Michel Dumontier, I Jsbrand Jan Aalbersberg, Gabrielle Appleton, Myles Axton, Arie Baak, Niklas Blomberg, Jan-Willem Boiten, Luiz Bonino da Silva Santos, Philip E Bourne,[...]. Sci Data 2016
9
Testing an online, dynamic consent portal for large population biobank research.
Daniel B Thiel, Jodyn Platt, Tevah Platt, Susan B King, Nicole Fisher, Robert Shelton, Sharon L R Kardia. Public Health Genomics 2015
Daniel B Thiel, Jodyn Platt, Tevah Platt, Susan B King, Nicole Fisher, Robert Shelton, Sharon L R Kardia. Public Health Genomics 2015
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8
Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.
Flavio D'Abramo, Jan Schildmann, Jochen Vollmann. BMC Med Ethics 2015
Flavio D'Abramo, Jan Schildmann, Jochen Vollmann. BMC Med Ethics 2015
15
The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results.
Cristian Pattaro, Martin Gögele, Deborah Mascalzoni, Roberto Melotti, Christine Schwienbacher, Alessandro De Grandi, Luisa Foco, Yuri D'Elia, Barbara Linder, Christian Fuchsberger,[...]. J Transl Med 2015
Cristian Pattaro, Martin Gögele, Deborah Mascalzoni, Roberto Melotti, Christine Schwienbacher, Alessandro De Grandi, Luisa Foco, Yuri D'Elia, Barbara Linder, Christian Fuchsberger,[...]. J Transl Med 2015
20
Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.
Sabina Gainotti, Cathy Turner, Simon Woods, Anna Kole, Pauline McCormack, Hanns Lochmüller, Olaf Riess, Volker Straub, Manuel Posada, Domenica Taruscio,[...]. Eur J Hum Genet 2016
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Public and biobank participant attitudes toward genetic research participation and data sharing.
A A Lemke, W A Wolf, J Hebert-Beirne, M E Smith. Public Health Genomics 2010
A A Lemke, W A Wolf, J Hebert-Beirne, M E Smith. Public Health Genomics 2010
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The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.
Brent Daniel Mittelstadt, Luciano Floridi. Sci Eng Ethics 2016
Brent Daniel Mittelstadt, Luciano Floridi. Sci Eng Ethics 2016
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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. Soc Sci Med 2011
Kieran C O'Doherty, Michael M Burgess, Kelly Edwards, Richard P Gallagher, Alice K Hawkins, Jane Kaye, Veronica McCaffrey, David E Winickoff. Soc Sci Med 2011
8
Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials.
Adam Nishimura, Jantey Carey, Patricia J Erwin, Jon C Tilburt, M Hassan Murad, Jennifer B McCormick. BMC Med Ethics 2013
Adam Nishimura, Jantey Carey, Patricia J Erwin, Jon C Tilburt, M Hassan Murad, Jennifer B McCormick. BMC Med Ethics 2013
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The RUDY study: using digital technologies to enable a research partnership.
Harriet J A Teare, Joanna Hogg, Jane Kaye, Raashid Luqmani, Elaine Rush, Alison Turner, Laura Watts, Melanie Williams, M Kassim Javaid. Eur J Hum Genet 2017
Harriet J A Teare, Joanna Hogg, Jane Kaye, Raashid Luqmani, Elaine Rush, Alison Turner, Laura Watts, Melanie Williams, M Kassim Javaid. Eur J Hum Genet 2017
35
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
Stephanie A Kraft, Mildred K Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E Ormond, Harold S Luft, Benjamin S Wilfond, Sandra Soo-Jin Lee. Am J Bioeth 2018
Stephanie A Kraft, Mildred K Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E Ormond, Harold S Luft, Benjamin S Wilfond, Sandra Soo-Jin Lee. Am J Bioeth 2018
8
Should donors be allowed to give broad consent to future biobank research?
Mats G Hansson, Joakim Dillner, Claus R Bartram, Joyce A Carlson, Gert Helgesson. Lancet Oncol 2006
Mats G Hansson, Joakim Dillner, Claus R Bartram, Joyce A Carlson, Gert Helgesson. Lancet Oncol 2006
6
A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.
Nanibaa' A Garrison, Nila A Sathe, Armand H Matheny Antommaria, Ingrid A Holm, Saskia C Sanderson, Maureen E Smith, Melissa L McPheeters, Ellen W Clayton. Genet Med 2016
Nanibaa' A Garrison, Nila A Sathe, Armand H Matheny Antommaria, Ingrid A Holm, Saskia C Sanderson, Maureen E Smith, Melissa L McPheeters, Ellen W Clayton. Genet Med 2016
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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,[...]. J Law Biosci 2014
Timothy Caulfield, Sarah Burningham, Yann Joly, Zubin Master, Mahsa Shabani, Pascal Borry, Allan Becker, Michael Burgess, Kathryn Calder, Christine Critchley,[...]. J Law Biosci 2014
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The tension between data sharing and the protection of privacy in genomics research.
Jane Kaye. Annu Rev Genomics Hum Genet 2012
Jane Kaye. Annu Rev Genomics Hum Genet 2012
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A tiered-layered-staged model for informed consent in personal genome testing.
Eline M Bunnik, A Cecile J W Janssens, Maartje H N Schermer. Eur J Hum Genet 2013
Eline M Bunnik, A Cecile J W Janssens, Maartje H N Schermer. Eur J Hum Genet 2013
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Interactive multimedia consent for biobanking: a randomized trial.
Christian M Simon, David W Klein, Helen A Schartz. Genet Med 2016
Christian M Simon, David W Klein, Helen A Schartz. Genet Med 2016
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Biobanking from the patient perspective.
Derick Mitchell, Jan Geissler, Alison Parry-Jones, Hans Keulen, Doris C Schmitt, Rosaria Vavassori, Balwir Matharoo-Ball. Res Involv Engagem 2015
Derick Mitchell, Jan Geissler, Alison Parry-Jones, Hans Keulen, Doris C Schmitt, Rosaria Vavassori, Balwir Matharoo-Ball. Res Involv Engagem 2015
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Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.
Victoria Coathup, Harriet J A Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P Takahashi, Kazuto Kato. BMC Med Ethics 2016
Victoria Coathup, Harriet J A Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P Takahashi, Kazuto Kato. BMC Med Ethics 2016
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The ethics of research biobanking: a critical review of the literature.
Klaus Hoeyer. Biotechnol Genet Eng Rev 2008
Klaus Hoeyer. Biotechnol Genet Eng Rev 2008
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Genes, cells, and biobanks: Yes, there's still a consent problem.
Timothy Caulfield, Blake Murdoch. PLoS Biol 2017
Timothy Caulfield, Blake Murdoch. PLoS Biol 2017
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Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research.
Thomas Ploug, Søren Holm. BMJ 2015
Thomas Ploug, Søren Holm. BMJ 2015
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Consent Codes: Upholding Standard Data Use Conditions.
Stephanie O M Dyke, Anthony A Philippakis, Jordi Rambla De Argila, Dina N Paltoo, Erin S Luetkemeier, Bartha M Knoppers, Anthony J Brookes, J Dylan Spalding, Mark Thompson, Marco Roos,[...]. PLoS Genet 2016
Stephanie O M Dyke, Anthony A Philippakis, Jordi Rambla De Argila, Dina N Paltoo, Erin S Luetkemeier, Bartha M Knoppers, Anthony J Brookes, J Dylan Spalding, Mark Thompson, Marco Roos,[...]. PLoS Genet 2016
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Broad Consent Is Consent for Governance.
Sarah N Boers, Johannes J M van Delden, Annelien L Bredenoord. Am J Bioeth 2015
Sarah N Boers, Johannes J M van Delden, Annelien L Bredenoord. Am J Bioeth 2015
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Consent and research governance in biobanks: evidence from focus groups with medical researchers.
E A Whitley, N Kanellopoulou, J Kaye. Public Health Genomics 2012
E A Whitley, N Kanellopoulou, J Kaye. Public Health Genomics 2012
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Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.
Menno Mostert, Annelien L Bredenoord, Monique C I H Biesaart, Johannes J M van Delden. Eur J Hum Genet 2016
Menno Mostert, Annelien L Bredenoord, Monique C I H Biesaart, Johannes J M van Delden. Eur J Hum Genet 2016
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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. J Med Internet Res 2016
Karen Spencer, Caroline Sanders, Edgar A Whitley, David Lund, Jane Kaye, William Gregory Dixon. J Med Internet Res 2016
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iCONCUR: informed consent for clinical data and bio-sample use for research.
Hyeoneui Kim, Elizabeth Bell, Jihoon Kim, Amy Sitapati, Joe Ramsdell, Claudiu Farcas, Dexter Friedman, Stephanie Feudjio Feupe, Lucila Ohno-Machado. J Am Med Inform Assoc 2017
Hyeoneui Kim, Elizabeth Bell, Jihoon Kim, Amy Sitapati, Joe Ramsdell, Claudiu Farcas, Dexter Friedman, Stephanie Feudjio Feupe, Lucila Ohno-Machado. J Am Med Inform Assoc 2017
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Equitable Participation in Biobanks: The Risks and Benefits of a "Dynamic Consent" Approach.
Megan Prictor, Harriet J A Teare, Jane Kaye. 2018
Megan Prictor, Harriet J A Teare, Jane Kaye. 2018
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Traditional and electronic informed consent for biobanking: a survey of U.S. biobanks.
Christian M Simon, David W Klein, Helen A Schartz. Biopreserv Biobank 2014
Christian M Simon, David W Klein, Helen A Schartz. Biopreserv Biobank 2014
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Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.
Nils Homer, Szabolcs Szelinger, Margot Redman, David Duggan, Waibhav Tembe, Jill Muehling, John V Pearson, Dietrich A Stephan, Stanley F Nelson, David W Craig. PLoS Genet 2008
Nils Homer, Szabolcs Szelinger, Margot Redman, David Duggan, Waibhav Tembe, Jill Muehling, John V Pearson, Dietrich A Stephan, Stanley F Nelson, David W Craig. PLoS Genet 2008
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Biobanking, consent, and control: a survey of Albertans on key research ethics issues.
Timothy Caulfield, Christen Rachul, Erin Nelson. Biopreserv Biobank 2012
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Public perspectives on informed consent for biobanking.
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson. Am J Public Health 2009
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson. Am J Public Health 2009
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Biobanks, consent and claims of consensus.
Zubin Master, Erin Nelson, Blake Murdoch, Timothy Caulfield. Nat Methods 2012
Zubin Master, Erin Nelson, Blake Murdoch, Timothy Caulfield. Nat Methods 2012
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Donor's support tool: Enabling informed secondary use of patient's biomaterial and personal data.
Haridimos Kondylakis, Lefteris Koumakis, Stephanie Hänold, Iheanyi Nwankwo, Nikolaus Forgó, Kostas Marias, Manolis Tsiknakis, Norbert Graf. Int J Med Inform 2017
Haridimos Kondylakis, Lefteris Koumakis, Stephanie Hänold, Iheanyi Nwankwo, Nikolaus Forgó, Kostas Marias, Manolis Tsiknakis, Norbert Graf. Int J Med Inform 2017
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Public opinion about the importance of privacy in biobank research.
David J Kaufman, Juli Murphy-Bollinger, Joan Scott, Kathy L Hudson. Am J Hum Genet 2009
David J Kaufman, Juli Murphy-Bollinger, Joan Scott, Kathy L Hudson. Am J Hum Genet 2009
4
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