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Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project – TRUST (Kate Chatfield, et al | July 2018)0

Posted by Admin in on August 28, 2018
 

Executive Summary and Introduction
Community engagement is an ethical imperative (a ‘must’) for researchers operating globally. Research participants, their local communities and research partners in international locations should be equal stakeholders1 in the pursuit of research-related gains.2,3

Great TRUST paper about a more respectful approach to research with communities. We have included links to a treasure trove of papers, reports, blog posts and news items on matters around the topics discussed in this paper.

In the 1990s, community engagement became prominent as the new guiding light of public health efforts. Involving communities in research and health-improvement programs led to better results than government-led programs alone.4 At the same time, the emerging need to protect indigenous communities in genetic research led Canadian Charles Weijer to demand a fifth principle in bioethics5,6: protection for communities.7 The individualistic nature of existing research ethics principles, stemming from US origins with its traditional emphasis upon individual autonomy was thus questioned. Asian and African ethicists added their voices to highlight the importance of respect for communities, as well as individuals.8,9
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This report provides guidance on community engagement in research from the perspective of the four TRUST values: fairness, respect, care and honesty.
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These values were identified by a global group of experts as the cornerstones of equitable research partnerships between high-income country (HIC) and low- and middle-income country (LMIC) research partners in any discipline10. The group included representatives from two vulnerable populations that carry a high burden of research: Kenyan sex workers and San indigenous peoples of Southern Africa. The guidance is suitable for all who support vulnerable populations involved in research projects, including civil society organisations, whether or not they are carrying out the research projects themselves.
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Chatfield, K. et al. (2018) Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project.  http://trust-project.eu/wp-content/uploads/2018/07/TRUST-Community-Participation-in-Research-Final.pdf

Ethical Considerations When Using Geospatial Technologies for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)0

Posted by Admin in on August 19, 2018
 

ABSTRACT
Geospatial technologies have transformed the way we visualize and understand social phenomena and physical environments. There are significant advantages in using these technologies and data however, their use also presents ethical dilemmas such as privacy and security concerns as well as the potential for stigma and discrimination resulting from being associated with particular locations. Therefore, the use of geospatial technologies and resulting data needs to be critically assessed through an ethical lens prior to implementation of programmes, analyses or partnerships. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation using geospatial technologies. It is supplemented by a checklist that may be used as a practical tool to support reflection on the ethical use of geospatial technologies.

Berman, Gabrielle; de la Rosa, Sara; Accone, Tanya (2018). Ethical Considerations When Using Geospatial Technologies for Evidence Generation, Innocenti Discussion Papers no. 2018-02, UNICEF Office of Research – Innocenti, Florence https://www.unicef-irc.org/publications/971-ethical-considerations-when-using-geospatial-technologies-for-evidence-generation.html

(US) Controversial alcohol study cancelled by US health agency – Nature (Sara Reardon | June 2018)0

Posted by Admin in on August 11, 2018
 

The US National Institutes of Health (NIH) has terminated a controversial US$100-million study examining whether drinking small amounts of alcohol every day can improve health.

Further news about this now closed controversial study into alcohol consumption. Based on the allegations in the media you are left wondering what the various parties were thinking? This case could be used in professional development workshops to highlight how conflicts of interest can completely undermine the credibility of a project, the line of enquiry and those involved in a project.

The agency’s decision, announced on 15 June, came shortly after an NIH advisory council voted unanimously to end the trial. An agency investigation had found that NIH staff and outside researchers acted inappropriately by soliciting industry funding and biasing the grant-review process to favour specific scientists.
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Those findings would have undermined the study’s credibility if it had been allowed to proceed, said NIH director Francis Collins at the advisory-council meeting. “Is it even possible at this point that the results of this trial would have the credibility to influence anyone’s decision-making?” he asked. “That does in fact seem quite doubtful.”
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The study, which began enrolling participants in February 2018 under the auspices of the National Institute on Alcohol Abuse and Alcoholism (NIAAA), included $67 million from 5 alcohol companies over 10 years. It came under fire in March after the New York Times reported that the study’s lead investigator — cardiovascular researcher Kenneth Mukamal of Beth Israel Deaconess Medical Center in Boston, Massachusetts — and his collaborators had directly courted funding from the liquor industry in 2013 and 2014, before the study’s launch.
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Read the rest of this discussion piece

National Statement on Ethical Conduct in Human Research (2007) – Updated with new link to July 2018 update0

Posted by Admin in on July 12, 2018
 

National Statement 2018 coverThe National Statement is the Australian national reference for human research. It was issued by the NHMRC and has been endorsed by the ARC and UA. The document articulates the four core principles of merit and integrity, beneficence, justice and respect for persons. Specific advice is provided with regard to benefits and risk, informed consent, privacy, methodologies and potential participant populations. Guidance is also provided with regard to the appointment and operation of human research ethics committees, the conduct of ethical reviews, and the responsibilities of institutions. Even though the document has not been enacted compliance with the National Statement is a strict condition of NHMRC and ARC funding.

Since 2014 a joint working group (including appointees from AHEC, the ARC and UA) have been conducting a rolling review of the National Statement. Dr Allen is involved in this rolling review.

In 2015-17 a joint drafting committee (including appointees from AHEC, the ARC and UA) drafted changes and addition to the chapters in Section 3 of the National Statement, as well as corresponding changes to Section 5 and the glossary Dr Allen, Prof Israel and Prof Thomson, are involved in this rolling review.

Access – the PDF copy | the NS page

National Health and Medical Research Council, Australia (2007, updated 2018) National Statement on Ethical Conduct in Human Research. Available at: https://nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018

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