Consent for data processing under the General Data Protection Regulation: could 'dynamic consent' be a useful tool for researchers?

Autor: Prictor, M, Teare, HJA, Bell, J, Taylor, M, Kaye, J

The General Data Protection Regulation (GDPR) sets a high bar for consent for the processing of personal data. In the UK, researchers have been directed to rely on legal bases other than consent for processing personal data for research purposes. Inf

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Correction to: The role of physical activity in metabolic homeostasis before and after the onset of type 2 diabetes: an IMI DIRECT study.

Autor: Koivula RW; Department of Clinical Sciences, Lund University, Genetic and Molecular Epidemiology, CRC, Skåne University Hospital Malmö, Building 91, Level 12, Jan Waldenströms gata 35, SE-205 02, Malmö, Sweden. robert.koivula@med.lu.se.; Oxford Centre for Diabetes, Endocrinology and Metabolism, Radcliffe Department of Medicine, University of Oxford, Oxford, UK. robert.koivula@med.lu.se., Atabaki-Pasdar N; Department of Clinical Sciences, Lund University, Genetic and Molecular Epidemiology, CRC, Skåne University Hospital Malmö, Building 91, Level 12, Jan Waldenströms gata 35, SE-205 02, Malmö, Sweden., Giordano GN; Department of Clinical Sciences, Lund University, Genetic and Molecular Epidemiology, CRC, Skåne University Hospital Malmö, Building 91, Level 12, Jan Waldenströms gata 35, SE-205 02, Malmö, Sweden., White T; MRC Epidemiology Unit, University of Cambridge School of Clinical Medicine, Cambridge, UK., Adamski J; Research Unit Molecular Endocrinology and Metabolism, Genome Analysis Center, Helmholtz Zentrum München, German Research Center for Environmental Health, Neuherberg, Germany.; Lehrstuhl für Experimentelle Genetik, Technische Universität München, Freising-Weihenstephan, Germany.; Department of Biochemistry, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Republic of Singapore., Bell JD; Research Centre for Optimal Health, Department of Life Sciences, University of Westminister, London, UK., Beulens J; Department of Epidemiology and Biostatistics, Amsterdam Public Health Research Institute, Amsterdam University Medical Centre, Location VU University Medical Center, Amsterdam, the Netherlands., Brage S; MRC Epidemiology Unit, University of Cambridge School of Clinical Medicine, Cambridge, UK.; Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark., Brunak S; The Novo Nordisk Foundation Center for Protein Research, University of Copenhagen, Copenhagen, Denmark.; Department of Bio and Health Informatics, Technical University of Denmark, Lyngby, Denmark., De Masi F; The Novo Nordisk Foundation Center for Protein Research, University of Copenhagen, Copenhagen, Denmark.; Department of Bio and Health Informatics, Technical University of Denmark, Lyngby, Denmark., Dermitzakis ET; Department of Genetic Medicine and Development, University of Geneva Medical School, Geneva, Switzerland.; Institute of Genetics and Genomics in Geneva (iGE3), University of Geneva, Geneva, Switzerland.; Swiss Institute of Bioinformatics, Geneva, Switzerland., Forgie IM; Population Health & Genomics, School of Medicine, University of Dundee, Ninewells Hospital, Dundee, UK., Frost G; Nutrition and Dietetics Research Group, Department of Medicine, Division of Diabetes, Endocrinology and Metabolism, Imperial College London, Hammersmith Campus, London, UK., Hansen T; Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.; The Novo Nordisk Foundation Center for Basic Metabolic Research, Faculty of Health and Medical Science, University of Copenhagen, Copenhagen, Denmark., Hansen TH; The Novo Nordisk Foundation Center for Basic Metabolic Research, Faculty of Health and Medical Science, University of Copenhagen, Copenhagen, Denmark., Hattersley A; NIHR Exeter Clinical Research Facility, University of Exeter Medical School, Exeter, UK.; Institute of Biomedical and Clinical Science, University of Exeter Medical School, Exeter, UK., Kokkola T; Department of Medicine, University of Eastern Finland and Kuopio University Hospital, Kuopio, Finland., Kurbasic A; Department of Clinical Sciences, Lund University, Genetic and Molecular Epidemiology, CRC, Skåne University Hospital Malmö, Building 91, Level 12, Jan Waldenströms gata 35, SE-205 02, Malmö, Sweden., Laakso M; Department of Medicine, University of Eastern Finland and Kuopio University Hospital, Kuopio, Finland., Mari A; Institute of Neurosciences, National Research Council, Padova, Italy., McDonald TJ; NIHR Exeter Clinical Research Facility, University of Exeter Medical School, Exeter, UK., Pedersen O; The Novo Nordisk Foundation Center for Basic Metabolic Research, Faculty of Health and Medical Science, University of Copenhagen, Copenhagen, Denmark., Rutters F; Department of Epidemiology and Biostatistics, Amsterdam Public Health Research Institute, Amsterdam University Medical Centre, Location VU University Medical Center, Amsterdam, the Netherlands., Schwenk JM; Affinity Proteomics, Science for Life Laboratory, KTH - Royal Institute of Technology, Stockholm, Sweden., Teare HJA; HeLEX, Nuffield Department of Population Health, University of Oxford, Old Road Campus, Headington, Oxford, UK., Thomas EL; Research Centre for Optimal Health, Department of Life Sciences, University of Westminister, London, UK., Vinuela A; Department of Genetic Medicine and Development, University of Geneva Medical School, Geneva, Switzerland.; Institute of Genetics and Genomics in Geneva (iGE3), University of Geneva, Geneva, Switzerland.; Swiss Institute of Bioinformatics, Geneva, Switzerland., Mahajan A; Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK., McCarthy MI; Oxford Centre for Diabetes, Endocrinology and Metabolism, Radcliffe Department of Medicine, University of Oxford, Oxford, UK.; Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.; NIHR Oxford Biomedical Research Centre, Churchill Hospital, Oxford, UK.; Human Genetics, Genentech, South San Francisco, CA, USA., Ruetten H; Sanofi-Aventis Deutschland GmbH, R&D, Frankfurt am Main, Germany., Walker M; Institute of Cellular Medicine (Diabetes), Newcastle University, Newcastle upon Tyne, UK., Pearson E; Population Health & Genomics, School of Medicine, University of Dundee, Ninewells Hospital, Dundee, UK., Pavo I; Eli Lilly Regional Operations GmbH, Vienna, Austria., Franks PW; Department of Clinical Sciences, Lund University, Genetic and Molecular Epidemiology, CRC, Skåne University Hospital Malmö, Building 91, Level 12, Jan Waldenströms gata 35, SE-205 02, Malmö, Sweden.; Oxford Centre for Diabetes, Endocrinology and Metabolism, Radcliffe Department of Medicine, University of Oxford, Oxford, UK.; Department of Nutrition, Harvard School of Public Health, Boston, MA, USA.; Department of Public Health & Clinical Medicine, Section for Medicine, Umeå University Hospital, Umeå, Sweden.

Publikováno v: Diabetologia [Diabetologia] 2021 Jan; Vol. 64 (1), pp. 260-261.

Dynamic Consent: An Evaluation and Reporting Framework.

Autor: Prictor M; Melbourne Law School, The University of Melbourne, Carlton, Victoria, Australia., Lewis MA; RTI International, Seattle, Washington, USA., Newson AJ; Sydney Health Ethics, Faculty of Medicine and Health, School of Public Health, The University of Sydney, Sydney, New South Wales, Australia., Haas M; Australian Genomics Health Alliance, Parkville, Victoria, Australia.; Murdoch Children's Research Institute, Parkville, Victoria, Australia., Baba S; Osaka University, Suita, Japan., Kim H; Yonsei University, Seoul, Republic of Korea., Kokado M; Osaka University, Suita, Japan., Minari J; Uehiro Research Division for iPS Cell Ethics, CiRA, Kyoto University, Japan., Molnár-Gábor F; Heidelberg Academy of Sciences and Humanities, Germany., Yamamoto B; Osaka University, Suita, Japan., Kaye J; Melbourne Law School, The University of Melbourne, Carlton, Victoria, Australia.; University of Oxford, Oxford, United Kingdom., Teare HJA; Melbourne Law School, The University of Melbourne, Carlton, Victoria, Australia.; University of Oxford, Oxford, United Kingdom.

Publikováno v: Journal of empirical research on human research ethics : JERHRE [J Empir Res Hum Res Ethics] 2020 Jul; Vol. 15 (3), pp. 175-186. Date of Electronic Publication: 2019 Nov 15.

Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.

Autor: Prictor M; Megan Prictor, Ph.D., is a Research Fellow in health, law and emerging technologies at Melbourne Law School, the University of Melbourne, Australia. Her interdisciplinary research focuses on informed consent approaches, electronic health records and data privacy. Sharon Huebner, Ph.D., is a Research Fellow at the University of Melbourne's Indigenous Studies Unit and an honorary Research Fellow at the Monash Indigenous Studies Centre, Monash University. She has worked with Aboriginal and Torres Strait Islander families for the past two decades protecting and preserving intergenerational rights to cultural heritage, including the digital return of material culture from archives, libraries and museums. Harriet J.A. Teare, D.Phil. (Chemistry), is a researcher in healthcare and policy, and Deputy Director of the Centre for Health, Law and Emerging Technologies (HeLEX), the University of Oxford. Over the past 6 years she has been developing dynamic consent approaches, working with different patient groups and organisations to learn directly from potential users about how such a tool could benefit their research experience. Luke Burchill, Ph.D., is an Associate Professor of Medicine at the University of Melbourne, where he leads the Aboriginal cardiovascular health disparities program. Clinically he works as an Adult Congenital Heart Disease Specialist at Royal Melbourne Hospital. Associate Professor Burchill is the first Aboriginal cardiologist in Australia. Jane Kaye, D.Phil., is the Director of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford and has a part-time Professorship at the University of Melbourne, Australia, where she also leads the HeLEX@Melbourne research team. The focus of Professor Kaye's research is on governance with an emphasis on personalised medicine, biobanks, privacy, data-sharing frameworks, international governance and translational research., Huebner S; Megan Prictor, Ph.D., is a Research Fellow in health, law and emerging technologies at Melbourne Law School, the University of Melbourne, Australia. Her interdisciplinary research focuses on informed consent approaches, electronic health records and data privacy. Sharon Huebner, Ph.D., is a Research Fellow at the University of Melbourne's Indigenous Studies Unit and an honorary Research Fellow at the Monash Indigenous Studies Centre, Monash University. She has worked with Aboriginal and Torres Strait Islander families for the past two decades protecting and preserving intergenerational rights to cultural heritage, including the digital return of material culture from archives, libraries and museums. Harriet J.A. Teare, D.Phil. (Chemistry), is a researcher in healthcare and policy, and Deputy Director of the Centre for Health, Law and Emerging Technologies (HeLEX), the University of Oxford. Over the past 6 years she has been developing dynamic consent approaches, working with different patient groups and organisations to learn directly from potential users about how such a tool could benefit their research experience. Luke Burchill, Ph.D., is an Associate Professor of Medicine at the University of Melbourne, where he leads the Aboriginal cardiovascular health disparities program. Clinically he works as an Adult Congenital Heart Disease Specialist at Royal Melbourne Hospital. Associate Professor Burchill is the first Aboriginal cardiologist in Australia. Jane Kaye, D.Phil., is the Director of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford and has a part-time Professorship at the University of Melbourne, Australia, where she also leads the HeLEX@Melbourne research team. The focus of Professor Kaye's research is on governance with an emphasis on personalised medicine, biobanks, privacy, data-sharing frameworks, international governance and translational research., Teare HJA; Megan Prictor, Ph.D., is a Research Fellow in health, law and emerging technologies at Melbourne Law School, the University of Melbourne, Australia. Her interdisciplinary research focuses on informed consent approaches, electronic health records and data privacy. Sharon Huebner, Ph.D., is a Research Fellow at the University of Melbourne's Indigenous Studies Unit and an honorary Research Fellow at the Monash Indigenous Studies Centre, Monash University. She has worked with Aboriginal and Torres Strait Islander families for the past two decades protecting and preserving intergenerational rights to cultural heritage, including the digital return of material culture from archives, libraries and museums. Harriet J.A. Teare, D.Phil. (Chemistry), is a researcher in healthcare and policy, and Deputy Director of the Centre for Health, Law and Emerging Technologies (HeLEX), the University of Oxford. Over the past 6 years she has been developing dynamic consent approaches, working with different patient groups and organisations to learn directly from potential users about how such a tool could benefit their research experience. Luke Burchill, Ph.D., is an Associate Professor of Medicine at the University of Melbourne, where he leads the Aboriginal cardiovascular health disparities program. Clinically he works as an Adult Congenital Heart Disease Specialist at Royal Melbourne Hospital. Associate Professor Burchill is the first Aboriginal cardiologist in Australia. Jane Kaye, D.Phil., is the Director of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford and has a part-time Professorship at the University of Melbourne, Australia, where she also leads the HeLEX@Melbourne research team. The focus of Professor Kaye's research is on governance with an emphasis on personalised medicine, biobanks, privacy, data-sharing frameworks, international governance and translational research., Burchill L; Megan Prictor, Ph.D., is a Research Fellow in health, law and emerging technologies at Melbourne Law School, the University of Melbourne, Australia. Her interdisciplinary research focuses on informed consent approaches, electronic health records and data privacy. Sharon Huebner, Ph.D., is a Research Fellow at the University of Melbourne's Indigenous Studies Unit and an honorary Research Fellow at the Monash Indigenous Studies Centre, Monash University. She has worked with Aboriginal and Torres Strait Islander families for the past two decades protecting and preserving intergenerational rights to cultural heritage, including the digital return of material culture from archives, libraries and museums. Harriet J.A. Teare, D.Phil. (Chemistry), is a researcher in healthcare and policy, and Deputy Director of the Centre for Health, Law and Emerging Technologies (HeLEX), the University of Oxford. Over the past 6 years she has been developing dynamic consent approaches, working with different patient groups and organisations to learn directly from potential users about how such a tool could benefit their research experience. Luke Burchill, Ph.D., is an Associate Professor of Medicine at the University of Melbourne, where he leads the Aboriginal cardiovascular health disparities program. Clinically he works as an Adult Congenital Heart Disease Specialist at Royal Melbourne Hospital. Associate Professor Burchill is the first Aboriginal cardiologist in Australia. Jane Kaye, D.Phil., is the Director of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford and has a part-time Professorship at the University of Melbourne, Australia, where she also leads the HeLEX@Melbourne research team. The focus of Professor Kaye's research is on governance with an emphasis on personalised medicine, biobanks, privacy, data-sharing frameworks, international governance and translational research., Kaye J; Megan Prictor, Ph.D., is a Research Fellow in health, law and emerging technologies at Melbourne Law School, the University of Melbourne, Australia. Her interdisciplinary research focuses on informed consent approaches, electronic health records and data privacy. Sharon Huebner, Ph.D., is a Research Fellow at the University of Melbourne's Indigenous Studies Unit and an honorary Research Fellow at the Monash Indigenous Studies Centre, Monash University. She has worked with Aboriginal and Torres Strait Islander families for the past two decades protecting and preserving intergenerational rights to cultural heritage, including the digital return of material culture from archives, libraries and museums. Harriet J.A. Teare, D.Phil. (Chemistry), is a researcher in healthcare and policy, and Deputy Director of the Centre for Health, Law and Emerging Technologies (HeLEX), the University of Oxford. Over the past 6 years she has been developing dynamic consent approaches, working with different patient groups and organisations to learn directly from potential users about how such a tool could benefit their research experience. Luke Burchill, Ph.D., is an Associate Professor of Medicine at the University of Melbourne, where he leads the Aboriginal cardiovascular health disparities program. Clinically he works as an Adult Congenital Heart Disease Specialist at Royal Melbourne Hospital. Associate Professor Burchill is the first Aboriginal cardiologist in Australia. Jane Kaye, D.Phil., is the Director of the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford and has a part-time Professorship at the University of Melbourne, Australia, where she also leads the HeLEX@Melbourne research team. The focus of Professor Kaye's research is on governance with an emphasis on personalised medicine, biobanks, privacy, data-sharing frameworks, international governance and translational research.

Publikováno v: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics [J Law Med Ethics] 2020 Mar; Vol. 48 (1), pp. 205-217.

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

Autor: Prictor M; Melbourne Law School, The University of Melbourne, Carlton, VIC, Australia., Teare HJA; Melbourne Law School, The University of Melbourne, Carlton, VIC, Australia.; Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom., Kaye J; Melbourne Law School, The University of Melbourne, Carlton, VIC, Australia.; Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom.

Publikováno v: Frontiers in public health [Front Public Health] 2018 Sep 05; Vol. 6, pp. 253. Date of Electronic Publication: 2018 Sep 05 (Print Publication: 2018).