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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research (Papers: Alyssa R. Morse, et al | April 2019)0

Posted by Admin in on May 5, 2019
 

Abstract
Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives on research ethics procedures was conducted in two interlinked stages: (a) a discussion forum with consumers, carers, and lived-experience researchers and (b) in-depth interviews with consumers and carers. Data collection and analysis drew strongly on methodological features of grounded theory. Privacy, confidentiality, and stigmatizing ethics procedures were key issues for consumer and carer participants. Recommendations for research practice include the following: considering the impact of information sharing on participants’ relationships and adopting individual-focused approaches to managing research risks.

Keywords:
caregiver; carer involvement; consumer involvement; mental health; research ethics; service user

Morse, A. R., Forbes, O., Jones, B. A., Gulliver, A., & Banfield, M. (2019). Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619844396
Publisher: https://journals.sagepub.com/doi/abs/10.1177/1556264619844396

African governments need to fund research ethics training – University World News (Paul Ndebele | April 2019)0

Posted by Admin in on April 24, 2019
 

There has been significant growth in international collaborative research implemented in Sub-Saharan Africa over the past three decades – funded mainly by the United States, United Kingdom, Germany, Japan and other nations. This growth has in part led to debates about the ethics of some of the research.

For example, during the late 1990s there were serious debates regarding use of placebos in research on HIV treatment when treatment outcomes were already known. Some commentators accused researchers from rich countries of using poor African countries to conduct research which they could not conduct in their own countries due to the stringent protections already in place. Additionally, several papers described the weak research oversight systems in several African countries.

In response, several research ethics capacity development programmes were initiated across Sub-Saharan Africa with the support of the World Health Organization, US National Institutes of Health, Wellcome Trust, Erasmus Mundus programme, pharmaceutical companies and others.

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(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)0

Posted by Admin in on April 19, 2019
 

Forty years on from a foundational report on how to protect people participating in research, cracks are showing, warns Nathaniel Raymond.

One of the primary documents aiming to protect human research participants was published in the US Federal Register 40 years ago this week. The Belmont Report was commissioned by Congress in the wake of the notorious Tuskegee syphilis study, in which researchers withheld treatment from African American men for years and observed how the disease caused blindness, heart disease, dementia and, in some cases, death.

This item obviously relates very specifically to the origins of the US human research ethics arrangements and the operation of IRBs, but the questions it poses are salient to Australasia.  The oft repeated statement: “But the information is already published and so is in the public domain and so is exempt”.  Is no longer helpful. We have provided a list of related items.

The Belmont Report lays out core principles now generally required for human research to be considered ethical. Although technically governing only US federally supported research, its influence reverberates across academia and industry globally. Before academics with US government funding can begin research involving humans, their institutional review boards (IRBs) must determine that the studies comply with regulation largely derived from a document that was written more than a decade before the World Wide Web and nearly a quarter of a century before Facebook.
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It is past time for a Belmont 2.0. We should not be asking those tasked with protecting human participants to single-handedly identify and contend with the implications of the digital revolution. Technological progress, including machine learning, data analytics and artificial intelligence, has altered the potential risks of research in ways that the authors of the first Belmont report could not have predicted. For example, Muslim cab drivers can be identified from patterns indicating that they stop to pray; the Ugandan government can try to identify gay men from their social-media habits; and researchers can monitor and influence individuals’ behaviour online without enrolling them in a study.
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The Foundation of Knowledge Production: Research Ethics Education in Taiwan (PowerPoint: Chien Chou | September 2018)0

Posted by Admin in on March 24, 2019
 

Outline

1. The Importance of Research Ethics
2. Researchers’Needs for Education
3. Education and Implementation Mechanism of Research Ethics in Taiwan’s Higher Education
4. Concluding Remarks

The Importance of research ethics

• Presents a baseline for all research behaviors
• Protects others, minimizes harm and increases the sum of good
• Supports trust among researchers and between research communities and the public
• Ensures research integrity and quality
• Satisfies organizational and professional demands • Copes with new and more challenging problems

Access Chien Chou’s presentation

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