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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Consent and confidentiality in the light of recent demands for data sharing (Papers: Garrath Williams and Iris Pigeot )0

Posted by Admin in on March 20, 2016

Abstract: Many attempts have been made to formalize ethical requirements for research. Among the most prominent mechanisms are informed consent requirements and data protection regimes. These mechanisms, however, sometimes appear as obstacles to research. In this opinion paper, we critically discuss conventional approaches to research ethics that emphasize consent and data protection. Several recent debates have highlighted other important ethical issues and underlined the need for greater openness in order to uphold the integrity of health-related research. Some of these measures, such as the sharing of individual-level data, pose problems for standard understandings of consent and privacy. Here, we argue that these interpretations tend to be overdemanding: They do not really protect research subjects and they hinder the research process. Accordingly, we suggest another way of framing these requirements. Individual consent must be situated alongside the wider distribution of knowledge created when the actions, commitments, and procedures of researchers and their institutions are opened to scrutiny. And instead of simply emphasizing privacy or data protection, we should understand confidentiality as a principle that facilitates the sharing of information while upholding important safeguards. Consent and confidentiality belong to a broader set of safeguards and procedures to uphold the integrity of the research process.

Keywords: Data protection; Ethical review; Informed consent; Privacy; Research ethics; Trustworthiness

Williams G & Pigeot I (2016) Consent and confidentiality in the light of recent demands for data sharing. Biometrical Journal. doi: 10.1002/bimj.201500044

The Seduction of Ethics: Transforming the Social Sciences (Books: Will C. van den Hoonaard 2011)0

Posted by Admin in on March 19, 2016

Abstract: Formal research-ethics committees in Canada now function as an industry, costing over thirty-five million dollars annually. The Seduction of Ethics argues that while ethics codes are alluring to the public, they fuel moral panic and increase demands for institutional accountability. Will C. van den Hoonaard explores the research-ethics review process itself by analysing the moral cosmology and practices of ethics committees regarding research and researchers.

Listed by Hill Times as one of the top 100 Canadian non-fiction books in 2011.
Nominated for three awards, 2012. Received “Honorable Mention” by the Charles H. Cooley Award Committee of the Society for the Study of Symbolic Interaction, 2012. (Reviewed four times):
Review in 2014: Symbolic Interaction 37 (2): 327-330.
Review in 2013: American J of Sociology 118 (4): 1136-1138; Transnational Legal Theory 4 (1): 146-156.
Review in 2012: Contemporary Sociology 41 (5): 678-679.

van den Hoonaard, Will C (2011) The Seduction of Ethics: Transforming the Social Sciences. Toronto: U of Toronto Press. ISBN 9781442642683

Human research ethics committees (Papers: Andrew Metcalfe 2014)0

Posted by Admin in on March 18, 2016

Excerpt: I write as someone who for served for a decade as a member and then a Presiding Member of one of the two HRECs at UNSW. As anthropological critics of HRECs rightly say, the HREC structure was set up on the basis of a biomedical model, but I was recruited to the UNSW Committees, along with several other social scientists, with the express intent of broadening the Committees’ understanding of social science and especially ethnographic research. In my decade, and through my experience of different universities, I have seen efficient facilitative consultative Committees, and I have seen narrow-minded obstructive policing Committees. I have seen Committees which had a large degree of independence from the governance structures of their host institution, and I finally resigned my position last year because I felt my university was no longer honouring that independence. My point is that while many of the AASnet criticisms of individual HREC decisions and procedures sound justified, that is not a reflection of the HREC structure per se. It reflects how individual Committees are going about their business.

Metcalfe A (2014) Human research ethics committees. The Australian Journal of Anthropology 25 (3): 383-384

Rethinking Vulnerability and Research: Defining the Need for a Post-Research Ethics Audit (Papers: Chesmal Siriwardhana 2015)0

Posted by Admin in on March 16, 2016

Abstract: Vulnerability of research populations is a fundamental area of interest and debate in bioethics. Based on mental health research in a humanitarian setting context, I explore vulnerability-related issues and developing enhanced protective practices. Motivated by experience from mental health research among forced migrants, and faced with a lack of guidance in the sharing of ethical lessons, I explore the concept of post-research ethics audit as a mechanism for reflection that researchers working with vulnerable populations can use. Presently, a coherent post-research strategy to critically examine the quality of ethical frameworks, debrief researcher experience and explore ethical challenges in research implementation is unavailable. The more established clinical audit process can be a model for the post-research ethics audit due to conceptual similarities in improving current practices by comparing the ideal versus the real scenario and measuring the effect of implementing changes. The proposed strategy presents a feasible way of identifying discrepancies between existing guidance and actual on-field implementation of research. Such a concept, if supported by empirical evidence based on its applicability, adaptability and feasibility, can become a platform to identify participant community needs, perceive community-specific ethical challenges, identify gaps in ethical oversight, and examine researcher integrity and potential misconduct. However, such activity needs to be researcher- and ethics committee-friendly, easily adaptable and implementable within existing ethical oversight frameworks, to enhance researcher-driven ethical practices and promote participant involvement.

Siriwardhana C (2015) Rethinking Vulnerability and Research: Defining the Need for a Post-Research Ethics Audit. Asian Bioethics Review  7(2) 188-200 10.1353/asb.2015.0015
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