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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

 For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection – UnDark (Adrian Pecotic | September 2019)0

Posted by Admin in on October 10, 2019

To be equitable, genetics research needs more diverse samples. But collecting that data could exploit the very people scientists intend to help.

IN 2009, RESEARCHERS collected DNA from four elderly men in Namibia, each from one of the many San indigenous communities scattered across southern Africa. A year later, analyses of the men’s DNA were published in the journal Nature — alongside that of South African human rights activist Desmond Tutu. The intention, in part, was to increase the visibility of southern, indigenous Africans in genetic-based medical research. Soon after, a nongovernmental organization (NGO) representing indigenous minorities in Southern Africa took issue with the consent procedures used to gather the data and wrote to Nature’s editors accusing the paper’s authors of “absolute arrogance, ignorance, and cultural myopia.”

The San case highlights the thorny ethics of collecting genetic data. Yet today, to make medicine more equitable, scientists see the importance of sampling DNA from more diverse populations. Most genetic research uses DNA from descendants of Europeans, which means the related medical applications — such as genetic tests to see the likelihood of developing a certain disease, called polygenic risk assessments — can only benefit those populations. In 2018 in the United States, for example, the National Institutes of Health launched All of Us, a research program that aims to collect DNA, electronic health records, and other data, from about one million Americans with emphasis on including many different groups of people.

“When we do genetic studies, trying to understand the genetic basis of common and complex diseases, we’re getting a biased snapshot,” said Alicia Martin, a geneticist at the Massachusetts General Hospital and the Broad Institute, a biomedical and genomics research center affiliated with Harvard and MIT.

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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


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.

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.

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):

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

Posted by Admin in on June 2, 2019

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.

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

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.

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