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Research Ethics Governance – An African Perspective (Chapter: Marelize I. Schoeman | May 2019)0

Posted by Admin in on June 2, 2019
 

Abstract
Governance structures in research are generally a retrospective response to unethical research practices. Similar to the international research landscape Africa has not been immune to human research abuses inclusive of unethical experimentation and clinical trials. An increase in research was noted in Africa this past decade in response to serious psychosocial and health-related challenges the continent faced. This increase in research has not necessarily brought about improvements in the governance and oversight of human research practices. In contrast, it increased the risk of exploitative research funded by resource-rich countries who conducted studies in Africa that would be difficult to conduct in countries with more established and strict research regulatory frameworks.

Even though the impact colonialism and the internationalisation of research had on ethics governance is recognised, African scholars is of the opinion that the debate about research ethics governance largely represents the opinions of scholars from Euro-western countries, with little contribution being made by African scholars. Against this background, the chapter presents an Afrocentric viewpoint of research ethics governance. In addition, Westernised and African research ethics practices and oversight structures were compared to identify challenges and guidelines. The research ethics governance landscape is to a large extent still an uncharted landscape creating the opportunity to develop a research ethics governance framework that acknowledges the unique humanistic morality and normative set of social rules and principles that guide the conduct of people in African societies. The chapter aims to make a significant contribution by stimulate critical discourse about the relevance of ethical principles and governance structures currently used in Africa.

Keywords
Research ethics governance, Research ethics committees, Biomedical research, Social science research 

Schoeman M.I. (2019) Research Ethics Governance – An African Perspective. In: Nortjé N., Visagie R., Wessels J. (eds) Social Science Research Ethics in Africa. Research Ethics Forum, vol 7. Springer, Cham
Publisher: https://www.springer.com/978-3-030-15401-1?wt_mc=ThirdParty.SpringerLink.3.EPR653.About_eBook

Thinking about ethics in Burma research (Papers: Lisa Brooten & Rosalie Metro | 2014)0

Posted by Admin in on May 28, 2019
 

Burma’s colonial past, its years under military dictatorship, its ongoing ethnic and religious conflicts, and the current shifts in the political landscape all present unique challenges for researchers seeking to behave ethically with their informants, their institutions, each other, and the public sphere. The recent upsurge of interest in Burma presents an opportunity for scholars who study the country to reflect on the ethical dilemmas they have confronted and to articulate how they have addressed them. It is our hope that this effort can help those who specialize in Burma to consider the norms and divergences that exist within our inter-disciplinary scholarly community, and can aid those new to Burma Studies in navigating their research in a more informed manner. In light of the need for such a conversation, The Journal of Burma Studies agreed to publish this special issue.

For some human research designs, (sub)disciplines and methodologies matter.  Contextual factors, privacy and risk, as well as potential vulnerabilities can be entirely different and a peril for unprepared.   This thought-provoking paper is a discussion about ethical research in  Burma. We have included links to four other items about research in dangerous contexts.

The inspiration for this issue came from a panel discussion Rose organized at the 2012 Burma Studies Conference in DeKalb, Illinois, USA. Elliott Prasse-Freeman and Patrick McCormick both presented earlier versions of the essays included here, and Rose described her difficulties with using consent forms in her ethnographic research with teachers on the Thai-Burma border (Metro 2014). The audience members, who represented a broad cross-section of the field, raised a number of important issues that bear further exploration, and several tensions emerged that are echoed in these pages. In particular, a debate on the nature of objectivity between a senior and a mid-career scholar, both anthropologists, pointed to a generational paradigm shift toward an engagement with [End Page 1] the inevitably political nature of Burma Studies. Another exchange, between McCormick, a US researcher based in Burma, and a Burmese person based in the US, highlighted what McCormick calls the “hierarchies of interpretation” in which the academic credentials and positionality of local and international scholars privilege some epistemologies over others. Additionally, several scholars brought up concerns with the consequences of conducting and publishing their research, whether that meant jeopardizing local contacts or having their work appropriated to ends they did not support. These discussions were thought provoking, despite the brevity, and when we found ourselves talking after the conference about the need for more discussion, we decided to continue the conversation in these pages
.

Brooten, L. and Metro, R., (2014). Thinking about ethics in Burma research. Journal of Burma Studies, 18(1), pp.1-22.
Publisher: https://muse.jhu.edu/article/545023/pdf

Aboriginal genome analysis comes to grips with ethics – Nature (Ewen Callaway | September 2011)0

Posted by Admin in on May 12, 2019
 

Sequencing effort provides a model for future studies of museum samples.

En route from Sydney to Perth, Australia, in the early 1920s, British ethnologist Alfred Cort Haddon acquired a tuft of human hair from a young Aboriginal man. He added it to his sizeable collection of hair from people living around the world.

Ninety years later, those locks have yielded the first complete genome sequence of an Aboriginal Australian, and provided clues about the timing of human migrations from Africa to Asia1 (see ‘Early human explorers charted a bold course’). The work has also underscored the bioethical dilemmas involved in plumbing the genomes of indigenous populations — especially when the DNA comes from an archived specimen such as Haddon’s. “To be sequencing DNA from the hair of a deceased indigenous person is uncharted ethical territory,” says Emma Kowal, a cultural anthropologist at the University of Melbourne.

The genome project, led by Eske Willerslev at the University of Copenhagen, received approval for the work from a group that represents Aboriginals in the region in which the man probably lived. But some scientists are jittery about how others in the Aboriginal community might receive the project, and worry that it could set back efforts to engage Aboriginals in genetic research. “In a sense, every Aboriginal Australian has had something about themselves revealed to the world without their consent,” says Hank Greely, who directs the Center for Law and the Biosciences at Stanford University in California.

Read the rest of this discussion piece

Genomic Research Through an Indigenous Lens: Understanding the Expectations (Nanibaa’ A. Garrison, et al | August 2019)0

Posted by Admin in on April 2, 2019
 

Abstract

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 30, 2019. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Garrison, N. A., Hudson, M., L. Ballantyne, LL., Garba, I. Martinez, A., Taualii, M., Arbour L., Caron, NR. and Rainie, SC. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20(1)
https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434

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