Where Did Informed Consent for Research Come From
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To understand the future of informed consent, we should pay attention to two ethical-legal sources in addition to the revised Common Rule. Physicians acting as investigators and patients serving as research subjects bring to that relationship a long history regarding consent to treatment, and everyone dealing with research ethics needs to be aware of the Nuremberg Code and other human-rights documents. These three streams make separate and distinctly different contributions to informed consent doctrine.
Health Research with Big Data: Time for Systemic Oversight
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In this paper, the authors propose a conceptual shift. First, they suggest that health research is set to take place within an evolving health data ecosystem; second, they situate the challenge of informed consent within this evolving ecosystem; and, third, argue for a systemic oversight approach to compensate for the ethical deficits caused by a weakened informed consent.
Design Issues in E-Consent
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John Wilbanks, B.A., is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was Executive Director of the Science Commons project at Creative Commons. He talks electronic methods of informed consent and related issues.
The Past, Present, and Future of Informed Consent in Research and Translational Medicine
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The authors goal was to look back on a century of law, ethics, and innovation in order to learn the lessons of the past. They aimed then to examine the pressing consent issues currently upon us as well as issues now emerging. Finally, they sought to look forward to the cutting-edge of innovation in informed consent and looming challenges. This critical examination of the past, present, and future yields new insights and fresh possibilities for the deeply challenging concept and practice of informed consent.
Letter from the Editor
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This issue of the Journal of Law, Medicine & Ethics features, by my count, the seventh symposium guest-edited by Susan M. Wolf of the University of Minnesota during my sixteen years as editor of the journal. Over the course of our long and productive partnership, Susan (whom I am now proud to call my friend) has produced issues and articles on subjects as diverse as genetic testing and disability insurance, incidental findings in human subject research, the sharing of genomic research results, a debate on the use of racial and ethnic categories in research, and the challenge of developing oversight approaches to nanobiotechnology. Amazingly, these big questions only hint at Susan’s academic interests and areas of research which are covered in this issue.
Is the concept of clinical equipoise still relevant to research?
Spencer Hey, Alex John London, and Charles Weijer argue that there is no better framework for justifying patient participation in research. But Annette Rid and Franklin Miller say that it is a mistake to require clinical research ethics to align with the norms of clinical practice
A collusion of interests: Hope, hype and science and the shaping of patient’s expectations of treatment (Powerpoint)
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Presented at COSA 2017
By Professor Ian Kerridge
Haematology Department, RNSH
Sydney Health Ethics, University of Sydney
13th November 2017
The Power of Patterns in Big Data - How and when can data be repurposed? (Powerpoint)
Presented at AAMRI
By Malcolm Crompton AM
Lead Privacy Advisor for Information Integrity Solutions Pty Ltd (IIS), a global consultancy specialising in data protection and privacy strategies.
6th December 2017
Don't let genetic discrimination condemn the genetic revolution: Nik Zeps at TEDxPerth
Genetic research might be key to a massive leap in our ability to cure disease. Yet regulations that are aimed at protecting privacy are also impacting our ability to research this powerful branch of science. In this talk, Dr. Nik Zeps argues that the fundamental reason why regulations should exist is not to protect information - but instead to prevent discrimination based on genetics. He argues that rather than stifling our ability to research, we should instead focus attention on overcoming all forms of discrimination based upon genetics.
The autobiography of a species in 23 chapters
Extract: This is not a book about the Human Genome Project — about mapping and sequencing techniques - but a book about what that project has found. Some time in the year 2000, we shall probably have a rough first draft of the complete human genome. In just a few short years we will have moved from knowing almost nothing about our genes to knowing everything.