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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Report for the Criminology Research Council (Australia) (Papers: Robert Chalmers and Mark Israel | 20050

Posted by Admin in on December 18, 2016
 

Summary

In this report, we offer guidance to criminologists attempting to navigate, and manage the impact of, laws that relate to the protection and disclosure of confidential and personal information that they gather in the course of their research.

We start by providing examples of the impact of relevant laws on the practice of criminologists to set this work in it proper context, and then provide a general overview of laws relating to issues such as privacy, confidentiality and compelled disclosure. Drawing on this background, Section Three provides brief responses to Frequently Asked Questions covering the ways researchers gather, store, use, disclose and reuse information. We conclude by examining possible future developments.

Throughout the report we attempt to illustrate how the practice of criminological research practically intersects with relevant laws. This intersection can be painful as relevant laws are by no means tailored to suit the environment of such research. However, our aim is to help criminologists and their institutions reach better informed decisions about management of legal risks although, of course, this report is not a substitute for specific advice.

Chalmers, R & Israel, M (2005) Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Report for the Criminology Research Council (Australia). 57 pages. http://crg.aic.gov.au/reports/200304-09.pdf

Toward a New Era of Trust and Transparency in Clinical Trials (Papers: Kathy L. Hudson et al | October 2016)0

Posted by Admin in on December 15, 2016
 

Clinical trials are the most publicly visible component of the biomedical research enterprise, from the potential human application of novel laboratory findings to the generation of robust evidence about treatments or preventive interventions in routine clinical care. These trials are also the point at which biomedical research most directly engages human participants—dedicated volunteers who trust investigators to uphold the highest standards of scientific rigor and ethical oversight. While clinical trials have evolved and improved over time—producing impressive advances in diagnosis, treatment, and prevention—there are still major challenges. Therefore, fundamental changes are needed to reflect science and society’s movement to increase efficiency, accountability, and transparency in clinical research.

Hudson KL, Lauer MS, Collins FS. Toward a New Era of Trust and Transparency in Clinical Trials. JAMA. 2016;316(13):1353-1354. doi:10.1001/jama.2016.14668
Publisher: http://jamanetwork.com/journals/jama/article-abstract/2553888

Beyond open data: realising the health benefits of sharing data – theBMJ (Elizabeth Pisani, et al September 2016)0

Posted by Admin in on December 14, 2016
 

Accessible data are not enough. We need to invest in systems that make the information useful, say Elizabeth Pisani and colleagues

As little as a decade ago, many researchers working in global health recoiled at the idea that they should openly share individual patient data with one another. Now, data sharing is being herded into the mainstream by pioneering researchers, with added pressure from funders, medicine regulatory authorities, public health agencies, and medical journals.1 2 3 4 5 6 But even those researchers most willing to share data are given little guidance on how that should happen, and the practice is still unusual, especially in low and middle income countries.

Concerns continue to be raised that data sharing will lead to data being analysed by rich institutions in industrialised countries while researchers in poorer countries with the highest burdens of infectious disease will lose control of their data and get little in return. Some fear that data sharing might harm patients and communities by breaching confidentiality, that the infrastructure is not up to it, and there is nowhere safe to put shared data.7

Our group includes researchers working for academic and humanitarian organisations, as well as public, charitable, and industry funders of data sharing efforts. Although we have raised concerns in the past,8 9 10 11 12 13 we are now involved in sharing information collected in low and middle income settings, including demographic surveillance data and the records of individual patients in clinical trials. We examine the extent to which the fears about data sharing have been realised in our work and what is needed to get the most value out of shared data.

Read the rest of this discussion piece and access the podcast

500+ Resources – Part Three of Nominations of best resources0

Posted by Admin in on December 12, 2016
 

This third nomination of favourite resources is from one of the AHRECS  senior consultants Associate Professor Martin Tolich. This week we’re going to be sharing some more nominations of people’s nomination of favourite resources? Got your own favourite? Drop us a line to gary.allen@ahrecs.com with your suggestion.

Extremism is a research ethics minefield | AHRECS Resource Library entry

Researchers work through sensitive topics when researching children and death thinking they have advanced along the continuum reaching the third untouchable rail. In the United States Social Security is the untouchable third rail that politicians will not touch. In Canada no government dares to touch health care. In research ethic committees their third rail is death. Their resistance to permitting researchers to engage the bereaved in research, working from the self-fulfilling prophecy that any study investigating the vulnerability of the bereaved is undermined by the participants’ acute vulnerability. What the Norwegian article demonstrates is there are other third rails along the continuum. In Extremism is a research ethics minefield” the resource expands what there is to know about research ethics.

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