Resources

Ethical Considerations in Research

Where Did Informed Consent for Research Come From

Uploaded 26 Jun 2018

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.

Ethical Considerations in Research

Health Research with Big Data: Time for Systemic Oversight

Uploaded 26 Jun 2018

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.

Ethical Considerations in Research

Design Issues in E-Consent

Uploaded 26 Jun 2018

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.

Ethical Considerations in Research

The Past, Present, and Future of Informed Consent in Research and Translational Medicine

Uploaded 26 Jun 2018

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. 

Ethical Considerations in Research

Letter from the Editor

Uploaded 26 Jun 2018

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.

Ethical Considerations in Research

Is the concept of clinical equipoise still relevant to research?

Uploaded 11 Jan 2018

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

Presentations and Webinars

A collusion of interests: Hope, hype and science and the shaping of patient’s expectations of treatment (Powerpoint)

Uploaded 18 Dec 2017

Presented at COSA 2017
By Professor Ian Kerridge
Haematology Department, RNSH
Sydney Health Ethics, University of Sydney 
13th November 2017 

 

Presentations and Webinars

The Power of Patterns in Big Data - How and when can data be repurposed? (Powerpoint)

Uploaded 18 Dec 2017

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

Content and Methods Based Electives

Don't let genetic discrimination condemn the genetic revolution: Nik Zeps at TEDxPerth

Uploaded 05 Nov 2017

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.

 
Content and Methods Based Electives

The autobiography of a species in 23 chapters

Uploaded 05 Nov 2017

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.