Timo Minssen, "Big Data and Intellectual Property Rights in the Health and Life Sciences"
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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016. This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S. The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich. Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.
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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Brent Mittelstadt, "From Protecting Individuals to Groups in Biomedical Big D...
Brent Mittelstadt, "From Protecting Individuals to Groups in Biomedical Big D...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Barbara Evans, "Big Data and the Meaning of Individual Autonomy in a Crowd"
Barbara Evans, "Big Data and the Meaning of Individual Autonomy in a Crowd"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Brenda M. Simon, "The Pathologies of Biomedical ‘Data-Generating’ Patents: Le...
Brenda M. Simon, "The Pathologies of Biomedical ‘Data-Generating’ Patents: Le...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Tal Zarsky, "Correlation v. Causation in Health-Related Big Data Analysis: Th...
Tal Zarsky, "Correlation v. Causation in Health-Related Big Data Analysis: Th...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Nicolas Terry, "Big Data, Regulatory Disruption, and Arbitrage in Health Care"
Nicolas Terry, "Big Data, Regulatory Disruption, and Arbitrage in Health Care"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Carmel Shachar, "Potential Roadblocks in Health Care Big Data Collection: Gob...
Carmel Shachar, "Potential Roadblocks in Health Care Big Data Collection: Gob...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Marcus Comiter, "Data Policy for Internet of Things Healthcare Devices: Align...
Marcus Comiter, "Data Policy for Internet of Things Healthcare Devices: Align...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Margaret Foster Riley, "Big Data, HIPAA, and the Common Rule: Time for Big Ch...
Margaret Foster Riley, "Big Data, HIPAA, and the Common Rule: Time for Big Ch...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Brent Mittelstadt, "From Protecting Individuals to Groups in Biomedical Big D...
Brent Mittelstadt, "From Protecting Individuals to Groups in Biomedical Big D...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Barbara Evans, "Big Data and the Meaning of Individual Autonomy in a Crowd"
Barbara Evans, "Big Data and the Meaning of Individual Autonomy in a Crowd"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Brenda M. Simon, "The Pathologies of Biomedical ‘Data-Generating’ Patents: Le...
Brenda M. Simon, "The Pathologies of Biomedical ‘Data-Generating’ Patents: Le...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Tal Zarsky, "Correlation v. Causation in Health-Related Big Data Analysis: Th...
Tal Zarsky, "Correlation v. Causation in Health-Related Big Data Analysis: Th...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Nicolas Terry, "Big Data, Regulatory Disruption, and Arbitrage in Health Care"
Nicolas Terry, "Big Data, Regulatory Disruption, and Arbitrage in Health Care"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Carmel Shachar, "Potential Roadblocks in Health Care Big Data Collection: Gob...
Carmel Shachar, "Potential Roadblocks in Health Care Big Data Collection: Gob...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Marcus Comiter, "Data Policy for Internet of Things Healthcare Devices: Align...
Marcus Comiter, "Data Policy for Internet of Things Healthcare Devices: Align...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Margaret Foster Riley, "Big Data, HIPAA, and the Common Rule: Time for Big Ch...
Margaret Foster Riley, "Big Data, HIPAA, and the Common Rule: Time for Big Ch...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Donna Gitter, "Informed Consent and Privacy of De-Identified and Estimated Da...
Donna Gitter, "Informed Consent and Privacy of De-Identified and Estimated Da...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Liza Dawson, "The Common Rule and Research with Data, Big and Small"
Liza Dawson, "The Common Rule and Research with Data, Big and Small"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
There are many factors that impede genomic variant sharing in the UK, despite it becoming a necessary part of clinical care. These include the lack of a designated infrastructure or mechanism aggravated by the complexity of laws that apply, and fragmented and variable advice from local ‘Caldicott guardians’ who guide NHS trusts on their responsibilities concerning data protection and confidentiality. Since the legitimacy of data sharing in the UK is framed in terms of ‘personal data’ being shared for ‘direct care’ (subject to legal exceptions), the blurred boundaries between clinical care and research, and the spectrum of identifiability of data also lead to differing interpretations resulting in inconsistent practices.
In a multidisciplinary collaboration, the PHG Foundation and the UK’s Association for Clinical Genetic Science co-hosted a workshop to examine the clinical necessity for sharing variant data and associated phenotypic information, the technical feasibility and the legal and regulatory impediments to such sharing. Delegates included clinicians, laboratory scientists, and key policy makers, including the National Data Guardian for Health and Care and representatives from the 100,000 Genomes Project, a pioneering research project which promises to build a legacy for future genomics services in the UK. The key finding from our work was that current arrangements for sharing genomic variants within the NHS are unsatisfactory and inconsistent practices are compromising safety and quality. Our workshop report [1] highlights the urgent need for (i) national agreement to optimise sharing within the NHS and develop consensus on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, and (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data.
Since publication of the workshop report, the NHS Consortium (operating within the DECIPHER database) has reported a 120% increase in the number of cases shared, the 100,000 Genomes Project and associated data embassy have got underway and the EU Data Protection Regulation has been finalised. However research highlights continuing public reservations about some aspects of data sharing including commercial access and misgivings around secondary uses of data. Publication of the National Data Guardian’s long-awaited review of consent and security provisions to provide guidance on a new consent and opt-out model for sharing patient information in the NHS, has been delayed pending the results of the EU referendum being known. Against this backdrop, the imperative to develop robust, proportionate policies for genomic data sharing becomes increasingly acute.
Funding from the PHG Foundation and the Association for Clinical Genetic Science.Legal and regulatory challenges to data sharing for clinical genetics and ge...
Legal and regulatory challenges to data sharing for clinical genetics and ge...Human Variome Project
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Sharona Hoffman, "Big Data and the Americans with Disabilities Act: Amending ...
Sharona Hoffman, "Big Data and the Americans with Disabilities Act: Amending ...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Donna Gitter, "Informed Consent and Privacy of De-Identified and Estimated Da...
Donna Gitter, "Informed Consent and Privacy of De-Identified and Estimated Da...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Liza Dawson, "The Common Rule and Research with Data, Big and Small"
Liza Dawson, "The Common Rule and Research with Data, Big and Small"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
There are many factors that impede genomic variant sharing in the UK, despite it becoming a necessary part of clinical care. These include the lack of a designated infrastructure or mechanism aggravated by the complexity of laws that apply, and fragmented and variable advice from local ‘Caldicott guardians’ who guide NHS trusts on their responsibilities concerning data protection and confidentiality. Since the legitimacy of data sharing in the UK is framed in terms of ‘personal data’ being shared for ‘direct care’ (subject to legal exceptions), the blurred boundaries between clinical care and research, and the spectrum of identifiability of data also lead to differing interpretations resulting in inconsistent practices.
In a multidisciplinary collaboration, the PHG Foundation and the UK’s Association for Clinical Genetic Science co-hosted a workshop to examine the clinical necessity for sharing variant data and associated phenotypic information, the technical feasibility and the legal and regulatory impediments to such sharing. Delegates included clinicians, laboratory scientists, and key policy makers, including the National Data Guardian for Health and Care and representatives from the 100,000 Genomes Project, a pioneering research project which promises to build a legacy for future genomics services in the UK. The key finding from our work was that current arrangements for sharing genomic variants within the NHS are unsatisfactory and inconsistent practices are compromising safety and quality. Our workshop report [1] highlights the urgent need for (i) national agreement to optimise sharing within the NHS and develop consensus on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, and (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data.
Since publication of the workshop report, the NHS Consortium (operating within the DECIPHER database) has reported a 120% increase in the number of cases shared, the 100,000 Genomes Project and associated data embassy have got underway and the EU Data Protection Regulation has been finalised. However research highlights continuing public reservations about some aspects of data sharing including commercial access and misgivings around secondary uses of data. Publication of the National Data Guardian’s long-awaited review of consent and security provisions to provide guidance on a new consent and opt-out model for sharing patient information in the NHS, has been delayed pending the results of the EU referendum being known. Against this backdrop, the imperative to develop robust, proportionate policies for genomic data sharing becomes increasingly acute.
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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Sharona Hoffman, "Big Data and the Americans with Disabilities Act: Amending ...
Sharona Hoffman, "Big Data and the Americans with Disabilities Act: Amending ...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Catherine M. Hammack, "Thought Leader Perspectives on Risks and Protections i...
Catherine M. Hammack, "Thought Leader Perspectives on Risks and Protections i...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.Isaac Kohane, "A Data Perspective on Autonomy, Human Rights, and the End of N...
Isaac Kohane, "A Data Perspective on Autonomy, Human Rights, and the End of N...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
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The range of data sources and technologies relevant to pharmaceutical R&D continues to expand. In this presentation, I summarise research evaluating the main legal barriers to the better use of health data for pharmaceutical innovation, concluding that the General Data Protection Regulation (GDPR) does not create new legal barriers, and that most issues identified are in fact uncertainties rather than barriers per se. There is a strong case for industry to deal proactively with the uncertainties, sharing good practice, engendering trust and promoting a shared understanding of the value to society of pharmaceutical research.
Author(s) and affiliation(s): Amanda Cole, Office of Health Economics.
Event: CPDP 2019: Computers, Privacy and Data Protection conference
Date: 01/02/2019
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Personal protective equipment or PPE has been a major topic of discussion across the nation. The COVID-19 pandemic has exposed major shortages of PPE and health care workers are being asked take care of patients with what some would argue is inadequate protection. The guidelines set by the CDC have changed and recommendations have even gone so far as to approve bandannas as a means for respiratory protection. Some have argued that it is unethical for health care workers to not have adequate protection, while others think it's their duty, protected or not. Adding to this debate has been theft, hoarding and disparate distribution of these critical supplies. During this panel discussion moderator Carmel Shachar, Stephen P. Wood, Christine Mitchell and Dr. Michael Mina explored the ethics of PPE in the COVID-19 pandemic.Christine Mitchell, Ethical Dilemmas in Mask and Equipment Shortages: Health ...
Christine Mitchell, Ethical Dilemmas in Mask and Equipment Shortages: Health ...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
March 27, 2020
Each year in low- and middle-income countries thousands of people are detained in hospitals for non-payment of medical bills, despite the fact that such detention is a violation of national and international law. Hospital detention for nonpayment of bills disproportionately affects the most vulnerable people, including post-partum women.
In the US, medical debt manifests itself in other ways, including bankruptcy, litigation to garnish wages, and foregone care. In both contexts, these scandals are the result of failures of financing, priority-setting, and legal oversight.
Without addressing these systemic issues, a "human right to health care" will remain a hollow slogan, as will political promises to achieve universal health coverage.
This event will feature Robert Yates of Chatham House, which has conducted an in-depth investigation of the global phenomenon of hospital detentions. Additional panelists will address manifestations of predatory lending and surprise medical fees in the United States, the ethical imperatives of financing and priority setting for UHC in general, and the implications for thinking about health care as a human right.
For more information, visit our website at: https://petrieflom.law.harvard.edu/events/details/debt-dignity-and-health-careRobert Yates, "Hospital Detentions For Non-Payment of Fees A Denial of Rights...
Robert Yates, "Hospital Detentions For Non-Payment of Fees A Denial of Rights...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
March 24, 2020
This event will highlight the challenges and opportunities in harnessing artificial intelligence (AI) technologies to serve the needs of individuals with disabilities and dependencies. AI can improve the lives of people with disabilities, such as smart devices supporting people with physical disabilities or sight loss. On the other hand, AI outputs can also reflect discriminatory biases present in the underlying data used to develop the algorithms. While this “garbage in, garbage out” principle is well documented in respect to AI and gender or race, it is understudied in respect to disability or dependencies.
Interdisciplinary panels of legal scholars, ethicists, AI developers, medical and service providers, and advocates with disabilities/ dependencies will explore best practices and guidelines for stakeholders, guided by ethical principles, legal considerations, and the needs of people with disabilities/ dependencies. Participants will seek to articulate clear criteria for developers and medical providers looking to harness the potential of AI to serve individuals with disabilities/ dependencies, including those whose disabilities/ dependencies are the result of aging, injury, or disease, and the caregivers -- including both professionals and unpaid friends and families -- who support some of these individuals.
This webinar was free and open the public.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/artificial-intelligence-and-disability-dependency Ranak Trivedi, "Bridging the Gap Between Artificial Intelligence and Natural ...
Ranak Trivedi, "Bridging the Gap Between Artificial Intelligence and Natural ...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
March 24, 2020
This event will highlight the challenges and opportunities in harnessing artificial intelligence (AI) technologies to serve the needs of individuals with disabilities and dependencies. AI can improve the lives of people with disabilities, such as smart devices supporting people with physical disabilities or sight loss. On the other hand, AI outputs can also reflect discriminatory biases present in the underlying data used to develop the algorithms. While this “garbage in, garbage out” principle is well documented in respect to AI and gender or race, it is understudied in respect to disability or dependencies.
Interdisciplinary panels of legal scholars, ethicists, AI developers, medical and service providers, and advocates with disabilities/ dependencies will explore best practices and guidelines for stakeholders, guided by ethical principles, legal considerations, and the needs of people with disabilities/ dependencies. Participants will seek to articulate clear criteria for developers and medical providers looking to harness the potential of AI to serve individuals with disabilities/ dependencies, including those whose disabilities/ dependencies are the result of aging, injury, or disease, and the caregivers -- including both professionals and unpaid friends and families -- who support some of these individuals.
This webinar was free and open the public.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/artificial-intelligence-and-disability-dependencyNoll Campbell,"Artificial Intelligence & Disabilities: Cognitive Impairment a...
Noll Campbell,"Artificial Intelligence & Disabilities: Cognitive Impairment a...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
February 14, 2020
On February 14, 2020, Harvard Medical School Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women's Hospital, in collaboration with the Petrie-Flom Center hosted the monthly health policy consortium on sugar-sweetened beverage excise taxes.
In recent years, some cities have tried to impose soda taxes and other new policies to reduce the obesity epidemic in the US—particularly among children—and its critical impact on society and the health care system. How effective are these policies? What is blocking their uptake? What alternatives should we consider?
For more information visit our website at: https://petrieflom.law.harvard.edu/events/details/soda-taxes-and-other-policy-responses-to-the-american-obesity-epidemicEmily M. Broad Leib, Policies to Reduce Sugar Consumption: The Battleground
Emily M. Broad Leib, Policies to Reduce Sugar Consumption: The BattlegroundThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
February 14, 2020
On February 14, 2020, Harvard Medical School Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women's Hospital, in collaboration with the Petrie-Flom Center hosted the monthly health policy consortium on sugar-sweetened beverage excise taxes.
In recent years, some cities have tried to impose soda taxes and other new policies to reduce the obesity epidemic in the US—particularly among children—and its critical impact on society and the health care system. How effective are these policies? What is blocking their uptake? What alternatives should we consider?
For more information visit our website at: https://petrieflom.law.harvard.edu/events/details/soda-taxes-and-other-policy-responses-to-the-american-obesity-epidemicSteven Gortmaker, Sugar Sweetened Beverage Taxes: Impact on Health, Health Ca...
Steven Gortmaker, Sugar Sweetened Beverage Taxes: Impact on Health, Health Ca...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 23, 2019
The future of neuroscience and law will be a computational future, as both fields are increasingly integrating artificial intelligence and machine learning. But what will this future look like? Can AI and digital technologies promote justice, diversity, and inclusion? Or will these technologies replicate, or even exacerbate, existing inequalities and biases? In this lunchtime event, leading experts in artificial intelligence, computational psychiatry, and the law discussed these questions as they explored how AI and digital technologies can advance social good through improved social, psychiatric, and legal interventions.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/computational-justiceJustin T. Baker, Into the Deep
Justin T. Baker, Into the DeepThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarNzovu Ulenga, Tanzania HIV/AIDS Progress: Successes, Challenges, and Lessons ...
Nzovu Ulenga, Tanzania HIV/AIDS Progress: Successes, Challenges, and Lessons ...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarProsper Okonkwo, 15+ Years of PEPFAR - The Nigeria Experience
Prosper Okonkwo, 15+ Years of PEPFAR - The Nigeria ExperienceThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarMaureen Luba Milambe, A 15 Year Review of PEPFAR Support to Malawi: How Has i...
Maureen Luba Milambe, A 15 Year Review of PEPFAR Support to Malawi: How Has i...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarPhyllis J. Kanki, 15+ Years of PEPFAR: Getting to Zero
Phyllis J. Kanki, 15+ Years of PEPFAR: Getting to ZeroThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarShahin Lockman, Botswana: Arc of and Response to the HIV Epidemic
Shahin Lockman, Botswana: Arc of and Response to the HIV EpidemicThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarCharles Holmes, 2009-2013 From an Emergency Response to Local Ownership and S...
Charles Holmes, 2009-2013 From an Emergency Response to Local Ownership and S...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
October 7, 2019
On October 7, 2019, the Harvard Global Health Institute will host a one-day symposium to explore what enabled this visionary program, and to showcase how it has transformed not just the worldwide HIV/AIDS response but global health delivery more broadly.
There are many lessons learned in PEPFAR’s story - from what it took to build a supply chain where there was none, to establishing the use of generic antiretroviral therapies (ARTs) and leveraging human capacity. This event convened the early architects of PEPFAR as well as experts and implementers currently leading the charge. We took a historically informed look at what it will take to stop global transmission, and shared tools useful for others hoping to move the needle on vexing problems in global health.
For more information, visit our website at https://petrieflom.law.harvard.edu/events/details/15-years-of-pepfarAnthony S. Fauci, The Birth of PEPFAR
Anthony S. Fauci, The Birth of PEPFARThe Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
September 10, 2019
Book Talk: Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law
Millions of Americans rely on the likes of birth control, IVF, and genetic testing to make plans as intimate and far-reaching as any over a lifetime. This is no less than the medicine of miracles. It fills empty cradles, frees families from terrible disease, and empowers them to fashion their lives on their own terms. But accidents happen.
Pharmacists mix up pills. Lab techs misread tests. Obstetricians tell women their healthy fetuses would be stillborn. Political and economic forces conspire against regulation. And judges throw up their hands when professionals foist parenthood on people who didn't want it, or childlessness on those who did. Failed abortions, switched donors, and lost embryos may be first-world problems. But these aren't innocent lapses or harmless errors. They're wrongs in need of rights.
At this event, author Dov Fox and an expert panel discussed his book Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law (Oxford University Press, 2019). Panelists explored the ways in which the book seeks to lift the curtain on reproductive negligence, give voice to the lives it upends, and vindicate the interests that advances in medicine and technology bring to full expression. They also examined the book's effort to force citizens and courts to rethink the reproductive controversies of our time, and to equip us to meet the new challenges -- from womb transplants to gene editing -- that lie just over the horizon.
Learn more: https://petrieflom.law.harvard.edu/events/details/book-talk-birth-rights-and-wrongsDov Fox, "Birth Rights & Wrongs: How Medicine and Technology Are Remaking Rep...
Dov Fox, "Birth Rights & Wrongs: How Medicine and Technology Are Remaking Rep...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
September 10, 2019
Book Talk: Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law
Millions of Americans rely on the likes of birth control, IVF, and genetic testing to make plans as intimate and far-reaching as any over a lifetime. This is no less than the medicine of miracles. It fills empty cradles, frees families from terrible disease, and empowers them to fashion their lives on their own terms. But accidents happen.
Pharmacists mix up pills. Lab techs misread tests. Obstetricians tell women their healthy fetuses would be stillborn. Political and economic forces conspire against regulation. And judges throw up their hands when professionals foist parenthood on people who didn't want it, or childlessness on those who did. Failed abortions, switched donors, and lost embryos may be first-world problems. But these aren't innocent lapses or harmless errors. They're wrongs in need of rights.
At this event, author Dov Fox and an expert panel discussed his book Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law (Oxford University Press, 2019). Panelists explored the ways in which the book seeks to lift the curtain on reproductive negligence, give voice to the lives it upends, and vindicate the interests that advances in medicine and technology bring to full expression. They also examined the book's effort to force citizens and courts to rethink the reproductive controversies of our time, and to equip us to meet the new challenges -- from womb transplants to gene editing -- that lie just over the horizon.
Learn more: https://petrieflom.law.harvard.edu/events/details/book-talk-birth-rights-and-wrongsKatherine L. Kraschel, "What Doesn't Kill Your Tort Only Makes It Stronger --...
Katherine L. Kraschel, "What Doesn't Kill Your Tort Only Makes It Stronger --...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
May 17, 2019
Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.
As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.
Presentation: Vardit Ravitsky, Associate Professor, Bioethics Programs, Department of Social and Preventive Medicine, School of Public Health, University of Montreal; Director, Ethics and Health Branch, Center for Research on Ethics - Prenatal Genome Sequencing: Ethical and Regulatory Implications for Post-Birth Access to Information
Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conferenceVardit Ravitsky, "Prenatal Genome Sequencing: Ethical and Regulatory Implicat...
Vardit Ravitsky, "Prenatal Genome Sequencing: Ethical and Regulatory Implicat...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
May 17, 2019
Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.
As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.
Presentation: Liza Vertinsky, Associate Professor of Law, Emory University School of Law and Emory Global Health Institute Faculty Fellow (with Yaniv Heled) - Genetic Privacy and Public Figures
Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conferenceLiza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"
Liza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
May 17, 2019
Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.
As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.
Presentation: Scott Schweikart, Senior Research Associate, Council on Ethical and Judicial Affairs, American Medical Association and Legal Editor, AMA Journal of Ethics - Human Gene Editing: An Ethical Analysis and Arguments for Regulatory Guidance at Both the National and Global Levels
Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conferenceScott Schweikart, "Human Genome Editing: An Ethical Analysis and Arguments fo...
Scott Schweikart, "Human Genome Editing: An Ethical Analysis and Arguments fo...The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
May 17, 2019
Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.
As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.
Presentation: Emily Qian, Genetic Counselor, Veritas Genetics (with Magalie Leduc, Rebecca Hodges, Bryan Cosca, Ryan Durigan, Laurie McCright, Doug Flood, and Birgit Funke) - Physician-Mediated Elective Whole Genome Sequencing Tests: Impacts on Informed Consent
Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conferenceEmily Qian, "Physician-Mediated Elective Whole Genome Sequencing Tests"
Emily Qian, "Physician-Mediated Elective Whole Genome Sequencing Tests"The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
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Timo Minssen, "Big Data and Intellectual Property Rights in the Health and Life Sciences"
- 1. Centre for Information and Innovation LawMay 6th, 2016 1 Big Data & Intellectual Property Rights in the Health & Life Sciences 2016 Annual Conference: Big Data, Health Law, and Bioethics Harvard Law School Prof. Dr. Timo Minssen Centre for Information and Innovation Law (CIIR) University of Copenhagen (DK)
- 2. Centre for Information and Innovation LawMay 6th, 2016 2 Introduction • Big Data = challenges & opportunities for health & life sciences • Sharing is caring: Paradigm shift demands co-operation & data sharing • IPRs relevant when R&D translated into ”real world”- applications • Availability, benefits & draw-backs of IPRs? Re-calibration required? • Different choices for different areas of Big Data Science
- 3. Centre for Information and Innovation LawMay 6th, 2016 3 Agenda 1. Most relevant IP & ”sui generis” rights in Big Data 2. 5 selected problematic ares in health and life scieces 3. Potential remedies 4. Conclusions
- 4. Centre for Information and Innovation LawMay 6th, 2016 4 6 overlapping IPRs & ”sui generis” IPs relevant for Big Data PATENTS Copyrights TRADEMARKS Data Base Protection Trade Secets Regulatory Exclusivities
- 5. Centre for Information and Innovation LawMay 6th, 2016 5 5 overlapping problems at the interface of Big Data & IPRs in health & life science 1.IPRs, standardization & competition law 2. Large research infrastructures 3. Public involvement & IPRs 4. IPRs, data transparency & sharing initiatives 5. R&D incentives in Precision Medicine
- 6. Centre for Information and Innovation LawMay 6th, 2016 6 Potential remedies •Transparency, better patent-search tools & high quality patents •Better training and involvement of scientific community •Clarify research exemptions & open innovation-platforms •User-generated models (FRAND, pat-pools & clearing houses) P1-Standards & competition •See above- plus case-dependent IP user-modalities •Clear IP & data policy (cf. ESS-ERIC & BBMRI-Eric) •Grant-back clauses, non excl. & non-discr. licensing •Clarify international guidelines on co-authorship & data transfer P2-Research Infrastructure •Coherency between open data policies & public IPR ownship •Case-by-case decisions on (1) Pure Open Data models, (2) Conditioned models & Properietary models. •Better sharing platforms. P3-Public Involv. •Re-consider interplay between transparency with IPRs & TS •Facilitate complementary & alternative incentives •Safe-guards with regard to misuse & privacy •Improved fair use clauses & research exemptions •New licensing regimes & better tools for FTO analysis P4–Transparency & sharing •Changes in patent law unlikely. •Alternative incentives for data-sets, algorytms & validation. •US data base protection •More flexibility with regard to reg. exclusivities & prizes P5-Incentives in precision medicine
- 7. Centre for Information and Innovation LawMay 6th, 2016 7 Conclusions • Many different IP relevant to Big Data • Paradigm shift results in overlapping IP challenges on different levels • Interplay between IPRs, new policies & business strategies requires further studies • Trad. IP system fails to support Big Data due to law, business & tech. changes • Flaws results in both IP lack of incentives & potential blocking effect due to new IP strategies. • Re-calibration of substantial & procedural IP rules + governance • Need for cross (Atlantic)-fertilization , studies & alignment of strategies
- 8. Centre for Information and Innovation LawMay 6th, 2016 8 • Utilization of Big Data only sustainable if Privacy, Competition, Regulation of test-services, sharing tools & data quality are addressed &…. • Legislation is supported by public (erosion of gate-keeper barriers) • Education & sufficient transparency are the key ´ -/14, Conclusions II
- 9. Centre for Information and Innovation LawMay 6th, 2016 9 Questions or Suggestions? Thanks for your attention ! E-mail: Timo.Minssen@jur.ku.dk Reseach page: http://jura.ku.dk/ciir/ansatte/?pure=da/persons/381631