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

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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The Oaxaca Incident: A geographer’s efforts to map a Mexican village reveal the risks of military entanglement – The Chronicle of Higher Education (Paul Voosen 2016)0

Posted by Admin in on May 10, 2016
 

An American scholar. A Mexican village. The U.S. military. What could go wrong?

On most maps, Tiltepec doesn’t look like much. A Zapotec village of several hundred indigenous people, Tiltepec clings to the steep slopes of the Sierra Juárez, a formidable range in the southern Mexican state of Oaxaca. Its people have lived there for generations in relative isolation under the shadow of Cerro Negro, where once their ancestors forced conquistadors off a cliff to the Rio Vera below. The valley teems with ancient earthen terraces, platforms, and sacred caves. Yet find Tiltepec on government maps and all you’ll see is bare topography and a name. Viewed on Google Earth, it’s even less — a few patches of white rectangles drowned in forest. For most of the world, Tiltepec might as well not exist.

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To disclose, or not to disclose? Context matters (Papers: Vasiliki Rahimzadeh, et al 2014)0

Posted by Admin in on May 1, 2016
 

Abstract: Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.

Rahimzadeh V, Avard1 D, S’ne´cal K, Knoppers BM and Sinnett D. To disclose, or not to disclose? Context matters. European Journal of Human Genetics (2015) 23, 279–284
Publisher (open access): http://www.nature.com/ejhg/journal/v23/n3/pdf/ejhg2014108a.pdf

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