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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The risk of re-identification versus the need to identify individuals in rare disease research (Papers: Mats G Hansson, et al | 2016)0

Posted by Admin in on January 8, 2017
 

Abstract
There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

Hansson MG, Lochmüller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins H, Taruscio D, Posada M and Woods S (2016) The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics 24, 1553–1558; doi:10.1038/ejhg.2016.52
Publisher (open access): http://www.nature.com/ejhg/journal/v24/n11/full/ejhg201652a.html

He Tangata Kei Tua Guidelines for Biobanking with Māori0

Posted by Admin in on December 6, 2016
 

Kei tua o te awe māpara he tangata kē, he mā?

Introduction

Māori ethical frameworks recognise that all research in New Zealand is of interest to Māori and outline community expectations of appropriate behavior in research to deliver the best outcomes for Māori. Research contributes to the broader development objectives of society and this endeavor is being supported by biobanking infrastructure. Ethics has a specific role in guiding key behaviours, processes and methodologies used in research. This document outlines a framework for addressing Māori ethical issues within the context of biobanking. It draws on a foundation of mātauranga (Indigenous knowledge) and tikanga Māori (Māori protocols and practices) and will be useful for researchers, ethics committee members and those who engage in consultation or advice about biobanking with Māori in local, regional, national or international settings.

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Did medicine save the life of ethics? – The Ethics Blog (Pär Segerdahl: October 2016)0

Posted by Admin in on November 10, 2016
 

About thirty-five years ago, Stephen Toulmin wrote an article on the topic: How medicine saved the life of ethics. I think it is still worth reading.

Toulmin argued roughly as follows:

During the first six decades of the 1900s, ethics wasn’t feeling well at all. One might say that it suffered from moral aphasia: it couldn’t talk sensibly about real ethical problems.

Read the rest of this discussion piece
Read Toulmin’s seminal article

Science academies blast US government’s planned research-ethics reforms – Nature (Sara Reardon June)0

Posted by Admin in on July 9, 2016
 

The US government’s proposed overhaul of regulations that govern research with human subjects is flawed and should be withdrawn, an independent advisory panel said today.

The regulations, which are known collectively as the ‘Common Rule’, address ethical issues such as informed consent and storage of study participants’ biological specimens. In its report on 29 June1, the US National Academies of Sciences, Engineering and Medicine said that the government’s proposed changes are “marred by omissions and a lack of clarity”, and would slow research while doing little to improve protections for patients enrolled in studies. Instead, the panel recommends that the government appoint an independent commission to craft new rules for such research.

The Common Rule, which was introduced in 1991, is based on the Belmont Report, a 1978 document that lays out principles for ethical research with humans, such as minimizing patient harm and maximizing the benefit of such research to society. Over time, achieving such goals has become more complex because of technological advances — such as the rise of DNA identification and shared databases, which can make it harder to maintain patient privacy…

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