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Scientists ‘may have crossed ethical line’ in growing human brains – The Guardian (Ian Sample | )0

Posted by Admin in on October 22, 2019
 

Debate needed over research with ‘potential for something to suffer’, neuroscientists say

Neuroscientists may have crossed an “ethical rubicon” by growing lumps of human brain in the lab, and in some cases transplanting the tissue into animals, researchers warn.

The creation of mini-brains or brain “organoids” has become one of the hottest fields in modern neuroscience. The blobs of tissue are made from stem cells and, while they are only the size of a pea, some have developed spontaneous brain waves, similar to those seen in premature babies.

Many scientists believe that organoids have the potential to transform medicine by allowing them to probe the living brain like never before. But the work is controversial because it is unclear where it may cross the line into human experimentation.

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Pay-to-Participate Trials and Vulnerabilities in Research Ethics Oversight – JAMA Network (Holly Fernandez Lynch, et al | September 2019)0

Posted by Admin in on October 2, 2019
 

Faced with the prospect of death or debilitating disease, patients and their families may be willing to try almost any treatment. A number of systems exist to help prevent this understandable desperation from resulting in serious harm, including standards of medical professionalism, requirements for product approval by the US Food and Drug Administration (FDA), and oversight of research by institutional review boards (IRBs). There are gaps in this safety net, however, that become particularly evident in the context of clinical trials that require patients to pay to participate. Although these trials may sometimes satisfy the standards of ethical research, the research oversight system in the United States is not sufficiently robust to ensure that this will always be the case.

Pay-to-Participate Trials
Clinical research is typically funded by governments, charitable foundations, and private companies. Built into this traditional funding system are review mechanisms intended to select for high-priority, high-quality studies. These mechanisms can often prevent the initiation of low-value studies, but they may also limit innovation by prioritizing incremental progress over bold ideas or deprioritizing research with little commercial promise. Inevitably, limited resources may force funders to forgo important studies.

One response is to seek out alternative funding sources, including study participants. Short of fraud protections, there is no legal prohibition against asking patients to pay to participate in research. The FDA explicitly permits charging for investigational products under certain circumstances, while regulations governing research consent simply call for disclosure of any “additional costs” that may result from participation.

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Australian universities must wake up to the risks of researchers linked to China’s military – The Conversation (Clive Hamilton | July 2019)0

Posted by Admin in on July 28, 2019
 

Two Australian universities, University of Technology Sydney and Curtin University, are conducting internal reviews of their funding and research approval procedures after Four Corners’ revealed their links to researchers whose work has materially assisted China’s human rights abuses against the Uyghur minority in Xinjiang province.

UTS, in particular, is in the spotlight because of a major research collaboration with CETC, the Chinese state-owned military research conglomerate. In a response to Four Corners, UTS expressed dismay at the allegations of human rights violations in Xinjiang, which were raised in a Human Rights Watch report earlier this year.

Yet, UTS has been aware of concerns about its collaboration with CETC for two years. When I met with two of the university’s deputy vice chancellors in 2017 to ask them about their work with CETC, they dismissed the concerns.

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Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda (Papers: Jennifer J. Mootz, et al | June 2019)0

Posted by Admin in on July 8, 2019
 

Abstract

Gender-based violence (GBV) is a major public health problem that is exacerbated in armed conflict settings. While specialized guidelines exist for conducting research with GBV, guidance on disseminating findings from GBV research is scant. This paper describes ethical considerations of designing and disseminating research findings on GBV, armed conflict, and mental health (including alcohol misuse) in conflict-affected settings in Northeastern Uganda. Following completion of two research studies, we conducted a half-day dissemination meeting with local community professionals (n=21) aged 24 to 60. Attendees were divided into small groups and given a quiz-style questionnaire on research findings to prompt discussion. Two primary ethical tensions arose. One ethical consideration was how to disseminate research findings equitably at the participant level after having taken care to collect data using safe and unharmful methods. Another ethical issue concerned how to transparently share findings of widespread problems in a hopeful and contextualized way in order to facilitate community response. We recommend planning for dissemination a priori, engaging with partners at local levels, and grounding dissemination for action in evidence-based practices.

Mootz, J. J., Taylor, L., Milton L. Khoshnood, W. & Khoshnood, K. (2019) Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda. Health and Human Rights Journal.
Publisher (Open Access): https://www.hhrjournal.org/2019/06/ethical-considerations-for-disseminating-research-findings-on-gender-based-violence-armed-conflict-and-mental-health-a-case-study-from-rural-uganda/

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