ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs (Papers: Anna Olsen and Julie Mooney-Somers 2014)0

Posted by Admin in on June 2, 2016
 

Abstract: In 2011, the Australian National Health and Medical Research Council (NHMRC) initiated an inquiry to determine whether there is a need for expanded ethical guidance in the form of a discrete guidance document for alcohol and other drug (AOD) research. An issues paper was developed to frame the inquiry. AOD researchers, Human Research Ethics Committees and others were invited to discuss whether there are distinctive ethical issues facing researchers and Human Research Ethics Committees in the AOD setting. Based on the public submissions, the NHMRC recommended that no AOD research-specific guidance is required. The inquiry and the NHMRC decision were not widely publicized, and we feel there is a need for further discussion. In order to do so, we have analysed the public inquiry submissions and described the central themes. Few submissions in the inquiry explicitly agreed AOD research warrants a specific guidance framework. Most were concerned that the NHMRC issues paper unfairly targeted people who use drugs as complex research participants. The inquiry highlights tensions around research governance and ethics review boards dealing with illicit and stigmatised behaviours. While we agree that a specific guidance framework for AOD research is not needed and could potentially be harmful and restrictive, we are concerned that the wholesale rejection of a guidance framework has closed the door to much needed debate. There remains, we argue, a need for alternative strategies and tools to support ethical research, inform and streamline institutional ethics approval, and engage and protect participants.

KEYWORDS: Human Research Ethics Committee; drug; ethics; guideline; research

Olsen A & Mooney-Somers J (2014) Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Review. 33(6):637-42. doi: 10.1111/dar.12140
Publisher: http://onlinelibrary.wiley.com/doi/10.1111/dar.12140/full

Case Study Non-Mandatory Ethics Bodies at Austrian Universities (Papers: Erich Griessler 2015)0

Posted by Admin in on May 28, 2016
 

Abstract: This case study analyses all together nine non-mandatory organizations and sub-units of the Austrian university landscape that deal with questions of research ethics or – some of them, more broadly – with ethical questions of research. The paper studies these organizations’ tasks, organizational set-ups, modes of operation and the extent to which they are doing well in terms of “managing contestation” and “responsibilisation” of research. Moreover, the paper looks into factors that promote and inhibit their work.

The case study is based on document analysis (see Annex) and nine interviews with chairpersons or senior employees of ethics bodies. The interviews were conducted between April and June 2014; eight of them face to face at people’s workplaces and one via telephone. The interviews lasted between 60 and 90 minutes, were fully transcribed, paraphrased and analysed by thematic analysis. The sample includes six comprehensive and one technical university; one university specialized in veterinary medicine and one university specialized in agriculture and life sciences. It comprises different institutional responses to address the question of ethics in research and innovation. In five cases these universities established ethics commissions, other institutions are called “ethics platform”, “agency for scientific integrity”, “university commission for scientific integrity and ethics” and “advisory board for ethical questions in scientific research”. With the exception of one organization, which is a joint establishment of several member organizations comprising university and non-university research organizations, all other bodies are located within the university. This study concerns basic and applied research by Austrian publicly funded universities. However, it also touches upon issues of contract research from industry and the public sector which is carried out at public universities.

Griessler E (2015) Case Study Non-Mandatory Ethics Bodies at Austrian Universities. ResAGorA
Publisher (Open access): http://irihs.ihs.ac.at/3686/1/IHS%20-%20Griessler_non%20mandatory%20ethics%20body_final.pdf
This paper will be presented at the 4S/EASST conference, Barcelona August 31-September 3 2016

Overview on health research ethics in Egypt and North Africa (Papers: Diaa Marzouk 2014)0

Posted by Admin in on May 27, 2016
 

Abstract: Developing countries, including Egypt and North African countries, need to improve their quality of research by enhancing international cooperation and exchanges of scientific information, as well as competing for obtaining international funds to support research activities. Research must comply with laws and other requirements for research that involves human subjects. The purpose of this article is to overview the status of health research ethics in Egypt and North African countries, with reference to other Middle Eastern countries. The EU and North African Migrants: Health and Health Systems project (EUNAM) has supported the revision of the status of health research ethics in Egypt and North African countries, by holding meetings and discussions to collect information about research ethics committees in Egypt, and revising the structure and guidelines of the committees, as well as reviewing the literature concerning ethics activities in the concerned countries. This overview has revealed that noticeable efforts have been made to regulate research ethics in certain countries in the Middle East. This can be seen in the new regulations, which contain the majority of protections mentioned in the international guidelines related to research ethics. For most of the internationally registered research ethics committees in North African countries, the composition and functionality reflect the international guidelines. There is growing awareness of research ethics in these countries, which extends to teaching efforts to undergraduate and postgraduate medical students.

Marzouk D, Abd El Aa W, Saleh A, Sleem H, Khyatti M, Mazini L, Hemminki K, Anwar WA (2014) Overview on health research ethics in Egypt and North Africa. European Journal of Public Health. Vol. 24, Supplement 1, 87–91. doi: 10.1093/eurpub/cku110.
Publisher (Open Access): http://eurpub.oxfordjournals.org/content/24/suppl_1/87.long

National Centre for Indigenous Genomics0

Posted by Admin in on May 24, 2016
 

We were blown away by this resource and this fantastic video. It is a wonderful example of how to explain the essence of complex research. The depth and skill of cultural communication is worthy of praise, recognition and is worth emulating.

“The National Centre for Indigenous Genomics (NCIG) aims to create a repository of Indigenous biospecimens, genomic data and documents for research and other uses that benefit Indigenous donors, their communities and descendants, the broader Indigenous community and the general Australian community.
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“About NCIG: an introduction for donor communities – This is the first of several animations NCIG is developing to assist consultation and engagement between the Centre and donor communities. This introductory film explains the origins of the NCIG collection, and its potential in the context of modern scientific and medical research.
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“This animation was collaboratively developed by representatives of NCIG’s Research Advisory Committee, with valuable input from the team at the Machado Joseph Disease Foundation and Browndog Productions. It was funded by The Canberra Medical Society.”

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