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

Resource Library

Research Ethics MonthlyAbout Us

ResourcesFirst People

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Enhancing ethics review of social and behavioral research: developing a review template in Ethiopia (Papers: Liya Wassie, et al | August 2019)0

Posted by Admin in on September 1, 2019
 

Abstract

Background:
Africa is increasingly becoming an important region for health research, mainly due to its heavy burden of disease, socioeconomic challenges, and inadequate health facilities. Regulatory capacities, in terms of ethical review processes, are also generally weak. The ethical assessment of social and behavioral research is relatively neglected compared to the review of biomedical and clinical studies, which led us to develop an ethics review assessment tool for use in the review of social and behavioral research in Ethiopia, which could potentially be of value in low- and middle-income settings.

Methods:
Initially, we did a comprehensive literature review on principles, guidelines, and practices of research ethics, on social and behavioral studies, from which we extracted query terms to explore the opinions of selected key informants and focus groups in Ethiopia. The discussants and informants were selected using a convenience sampling method to evaluate an ethics review template, which integrated issues that commonly arise in social and behavioral studies. Finally, we directly solicited opinions from the discussants about the desirability, feasibility, acceptability, and relevance of the ethics review assessment tool and used the resulting data to refine our initial draft.

Results and conclusion:
Although the same basic ethics principles govern all research studies, social and behavioral research have some disciplinary particularities that may require reviewers to exercise a different orientation of ethical attention in some cases. Using a qualitative approach, we developed a review assessment tool that could potentially be useful to raise awareness, focus attention, and strengthen the review of social and behavioral studies by ethics review committees, particularly in settings without a long-standing tradition of reviewing such research. This process also exposed some areas where further capacity building and discussion of ethical issues may be necessary among stakeholders in the review of social and behavioral research.

Keywords
Behavioral, social, qualitative, biomedical research, ethics review, low and middle income

Liya Wassie, Senkenesh Gebre-Mariam, Geremew Terekegne et al. (2019) Enhancing ethics review of social and behavioural research: Developing a review template in Ethiopia. Research Ethics 15(4) 1–23.
Publisher (Open Access): https://journals.sagepub.com/doi/full/10.1177/1747016119865731

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

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

Indigenous groups look to ancient DNA to bring their ancestors home – Nature (Nicky Phillips – April 2019)0

Posted by Admin in on May 9, 2019
 

Local communities and geneticists are working together to sequence DNA from remains that were taken from their homelands decades ago.

Several years ago, Gudju Gudju Fourmile welcomed back several members of his Yidinji community who had been taken from their homes in northern Australia almost a century ago. Like many other Indigenous communities in Australia, the Yidinji have worked for decades to bring the bodies of their ancestors home — which Aboriginal communities describe as returning to Country.

Many of the ancestors are off Country as a result of the dehumanizing practices of the nineteenth and early twentieth centuries, when it was common for white collectors to loot graves and sell the remains of Aboriginal people to museums in Australia, the United Kingdom and other countries. “When our remains are off Country, we try to make sure they come back,” says Fourmile, an elder in the community who lives in Cairns. “They need to be comfortable. That’s a big thing for many tribal groups.” And when his community finally reburied its ancestors in 2014, “everybody was so happy. And the Country felt good again,” Fourmile says.

Before the Yidinji elders laid their ancestors to rest, they received a request from scientists who had been analysing the DNA of living community members: could they sequence the ancestors’ genomes, too? With permission granted, a team led by evolutionary geneticist David Lambert at Griffith University in Brisbane extracted DNA from the remains of one individual, and confirmed that the ancient person was closely related to Yidinji people alive today1,2. “When you find something out like that, you jump for joy,” says Fourmile. The event also marked a turning point in the mindset of the community, he says, when members started to realize the potential of DNA analysis to help bring their people back home.

Read the rest of this discussion piece

0