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

Resource Library

Research Ethics MonthlyAbout Us

ResourcesHuman research ethics

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities (Papers: Tennille L. Marley | 2018)0

Posted by Admin in on September 16, 2018
 

Abstract
American Indians, Alaska Native, and other Indigenous people throughout the world have undergone and continue to experience research abuses. Qualitative data such as intellectual property, Indigenous knowledge, interviews, cultural expressions including songs, oral histories/stories, ceremonies, dances, and other texts, images, and recordings are at risk of exploitation, appropriation, theft, and misrepresentation and threaten the cultural sovereignty of American Indians, Alaska Native, and other Indigenous people. These issues are potentially magnified with the increasing use of big data. Partly as a result of past and current research abuse, the Indigenous data sovereignty, the control, ownership, and governance of research and data, is growing. In this article, I discuss American Indian political sovereignty, cultural sovereignty, and Indigenous data sovereignty, with an emphasis on qualitative data sovereignty. In addition, I explore whether Arizona’s public universities—Northern Arizona University, Arizona State University, and University of Arizona—policies and guidelines support Indigenous data sovereignty and the extent to which they align with the Arizona Board of Regent’s tribal consultation policy that governs relations between the three Arizona universities and Arizona American Indian nations. Overall expectations, requirements, and processes do not go far enough in supporting Indigenous data sovereignty. Although each university has specific research policies that follow the Arizona Board of Regent’s tribal consultation policy, the university guidelines differ in scope in term of supporting Indigenous data sovereignty. In addition, none of the policies address qualitative data sharing, including those in big data sets. Based on the findings I make several recommendations for researchers, including supporting the Indigenous sovereignty movement and to reconsider big data use and past positions about qualitative data ownership and sharing with regard to American Indians, Alaska Native, and other Indigenous people.

Keywords Indigenous data sovereignty, American Indian and Alaska Native, Indigenous people, qualitative data

Marley, T. L. “Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities.” American Behavioral Scientist 0(0): 0002764218799130.
Publisher: http://journals.sagepub.com/doi/abs/10.1177/0002764218799130#articleCitationDownloadContainer

Compensation for research-related harm: The implications of Venter v Roche Products (Pty) Limited and Others for research ethics committees (Papers: Ann Strode & Priya P. Singh | 2014)0

Posted by Admin in on September 13, 2018
 

Background.
The issue of what type of compensation a research participant would be entitled to in a clinical trial when they have signed an informed consent document excluding certain forms of compensation recently came before our courts in the matter of Venter v Roche Products (Pty) Limited and Others (Case No. 12285/08). In this case, the court had to consider whether the plaintiff, Mr Venter, was entitled to claim for non-medical costs such as pain and suffering, loss of income and general damages, even though the informed-consent document expressly excluded such claims.

Objectives.
To set out the facts, issues and judgment in the case, concluding with a discussion of the implications of the judgment for research ethics committees (RECs).

Methods.
Critical review of a judgment of the Western Cape High Court.

Results.
The court concluded that Mr Venter’s application for damages should be dismissed because he had voluntarily agreed to the limited compensation as set out in the informed consent form that had been approved by both the local RECs and the Medicines Control Council.

Conclusions.
The Venter case has shown that delictual claims for research-related injuries will not be successful if plaintiffs have agreed to limit their own rights through signing an informed-consent form that limits compensation. This places an important obligation on RECs to ensure that they carefully review compensation clauses in informed-consent documents and that these are made clear to potential research participants.

Strode, A., & Singh, P. (2014). Compensation for research-related harm: The implications of Venter v Roche Products (Pty) Limited and Others for research ethics committees. South African Medical Journal, 104(11), 759-761. doi:10.7196/SAMJ.8596
http://www.samj.org.za/index.php/samj/article/view/8596/6379

The perils of fieldwork in authoritarian states – University World News (Yojana Sharma | September 2018)0

Posted by Admin in on September 11, 2018
 

Doctoral students and researchers in the social and political sciences need more training to deal with the perils of fieldwork in authoritarian states in Southeast Asia, according to two experts on the region.

Before early career researchers (including overseas HDR candidates visiting their ‘home’ country) travel to an authoritarian state to conduct research, is there sufficient attention to professional development/capacity building with regard to the perils? This is a question for heads of area, mentors and supervisors, but could be usefully reconfirmed by research ethics review bodies. We have included links to trove of related items.

They note that existing “one size fits all” recommendations on field research “presume the setting to be liberal democratic regimes” rather than the less accessible or less secure and transparent authoritarian regimes prevalent in the region.
.
“The discipline of political science is poorly positioned to guide its own scholars on the best way to perform field research in countries lacking guarantees for norms of speech, movement and scholarship,” say Meredith Weiss, associate professor of political science at the State University of New York at Albany in the United States, and Lee Morgenbesser, a lecturer in comparative politics at Griffith University in Australia, in a just-published paper that draws on their own and other academics’ experiences of working in such countries.
.
“The implications of this lacuna are acute in Southeast Asia,” where nine out of 11 countries are classified as having authoritarian regimes, they say in their paper published in the Asian Studies Review entitled “Survive and Thrive: Field research in authoritarian Southeast Asia”.
.

Read the rest of this discussion piece

Research ethics in the Kalahari: issues, contradictions and concerns (Papers: Keyan Tomaselli | 2017)0

Posted by Admin in on September 6, 2018
 

Abstract
The effects of ethical clearance or institutional review board practices are discussed in relation to the experiences of academic field researchers on the one hand and indigenous research participants and/or co-generators of knowledge on the other. Ethical procedures such as protection (do no harm), control (micromanaging methods) and exploitation (taking ownership) are discussed in relation to researcher experiences in southern Africa. Researcher–researched relations, researcher and subject alienation, ethics creep and the clash of ontologies are examined. Some tentative solutions are proposed.

Keywords: ethics, gatekeepers, indigenous rights, institutional review board, Kalahari, ≠Khomani Bushmen

Tomaselli, K.G. (2017): Ethical Procedures? A Critical Intervention: The sacred, the profane, and the planet. The Ethnographic Edge, [S.l.], v. 1, n. 1, p. 3-16.
Publisher: https://www.tandfonline.com/doi/abs/10.1080/02560046.2016.1267253

0