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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Did a study of Indonesian people who spend most of their days under water violate ethical rules? – Science (Dyna Rochmyaningsih | July 2018)0

Posted by Admin in on August 14, 2018

In April, a paper showing why Indonesia’s Bajau people are such great divers drew worldwide attention as a striking example of recent human evolution. But the study, published in Cell, has created a different kind of stir in Indonesia, where some say it is an example of “helicopter research” carried out by scientists from rich countries with little consideration for local regulations and needs.

When conducting research in another country it is essential to rigorously determine what local research ethics arrangements and regulations apply to your planned work. While a local contact/assistant can be helpful (sometimes essential for respecting local traditions and protocols) a researcher experienced in the relevant (sub)discipline/design is more likely to be able to alert you to the jurisdiction’s ethical and legal requirements.

“Too many mistakes were made here,” says geneticist Herawati Sudoyo, who heads the Eijkman Institute for Molecular Biology in Jakarta. Indonesian officials say the research team failed to obtain ethical approval from a local review board and took DNA samples out of the country without the proper paperwork. And some Indonesian scientists complain that the only local researcher involved in the study had no expertise in evolution or genetics. But Eske Willerslev, director of the University of Copenhagen’s (KU’s) Centre for GeoGenetics, says the team he headed had a permit from the Indonesian government and worked hard to follow the rules. “I would never participate in research that I felt was unethical,” Willerslev says. The government hasn’t informed him about problems, he says, but, “If we have made an error that violates national or international guidelines, we would like to apologize for that.”

The issue escalated in late May, when Pradiptajati Kusuma, a geneticist at the Eijkman Institute who has also studied the Bajau, suggested in a tweet that the team could have faced prosecution under strict new rules on foreign research, proposed by the Indonesian government and now under debate. “Jail? Possible,” Kusuma wrote. He later deleted the tweet, but Melissa Ilardo, the Cellstudy’s first author, says she was so rattled that she canceled a July trip to Indonesia during which she planned to inform the Bajau about her study. “I did everything I could to conduct this research ethically and properly, and this is breaking my heart,” says Ilardo, a Ph.D. student at KU at the time of the fieldwork and now at the University of Utah in Salt Lake City.

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Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities0

Posted by Admin in on August 2, 2018

In general, ethics guidelines provide a set of principles to ensure research is safe, respectful, responsible, high quality, of benefit to Aboriginal and Torres Strait Islander people and communities and of benefit to research. Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders 2018 (the Guidelines) defines six core values — spirit and integrity, cultural continuity, equity, reciprocity, respect, and responsibility. Applying these values and other ethical principles will ensure that research conducted with or for Aboriginal and Torres Strait Islander people and communities, or their data or biological samples, is ethically conducted. 

The Guidelines are intended for use by researchers and ethics review bodies, such as Human Research Ethics Committees (HRECs). Aboriginal and Torres Strait Islander Peoples, individual research participants, participant groups, the wider community and other stakeholders may also find the Guidelines useful. 

Advice about how to use the Guidelines is provided on page 13. This includes information about Keeping research on track II 2018, which describes how the values and principles in the Guidelines can be put into practice. Additional principles and concepts relevant to research with Aboriginal and Torres Strait Islander Peoples and communities are set out on pages 15 to 19. Key terms, a glossary and a list of further resources are also provided. More information about the Guidelines is available on NHMRC’s website.

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Keeping research on track II0

Posted by Admin in on August 2, 2018

This guideline aims to support research participants, Aboriginal and Torres Strait Islander Peoples and communities to:

  • Make decisions that ensure the research journey respects Aboriginal and Torres Strait Islander Peoples’ and communities’ shared values, diversity, priorities, needs and aspirations.
  • Make decisions that ensure the research journey benefits Aboriginal and Torres Strait Islander people and communities as well as researchers and other Australians.
  • Recognise and understand their rights and responsibilities in being involved in all aspects of research.
  • Better understand the steps involved in making research ethical.

The information in this guideline comes from two key national publications which set out the requirements for the ethical conduct of research:

  • National Statement on Ethical Conduct in Human Research (the National Statement)
    The National Statement is the principal guideline setting out the requirements for the ethical design, review and conduct of all human research in Australia. The National Statement is about four main principles: respect; research merit and integrity; justice; and beneficence. The National Statement provides guidance on the ethical considerations that are relevant to the way that research is designed, reviewed and conducted.

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Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)0

Posted by Admin in on July 17, 2018


The idea of researchers building the trust of potential participants is sometimes viewed with caution (because of worry it will undermine the voluntary nature of participation) and scepticism (because of the time/resources required, that are needed to actually conduct the research). While such worries might seem reasonable, it is important to recognise: the historical experience of First Peoples and research has not been positive (and some of that ‘historical experience is fairly recent); Indigenous people are generally underrepresented in health research; and building trust is not only sound in terms of the ethical principle of Respect it’s likely to improve the usefulness of the results.

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.

Keywords: community review, Alaska Native, tribal, ethics, Native American, research, research conduct, trust, accountability

Hiratsuka, V. Y., Beans, J. A., Robinson, R. F., Shaw, J. L., Sylvester, I., & Dillard, D. A. (2017). Self-determination in health research: An Alaska Native example of Tribal ownership and research regulation. International Journal of Environmental Research and Public Health, 14(11), 1324.
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