ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(Australia) Unauthorised survey asked students to rate Chinese people out of seven – Sydney Morning Herald (Nick Bonyhady | September 2019)0

Posted by Admin in on October 13, 2019
 

An unauthorised survey delivered to students at the University of Sydney under the university’s official logo asked them to rate the attractiveness and intelligence of Chinese people out of seven.

It is interesting this story doesn’t mention the National Statement (2007 updated 2018), the Australian Code (2018) or research misconduct though this may be encapsulated by the reference to suspension and investigation. The reported questions raise concerns as to the merit of the work, respect, justice and the troubling spectre of the alt-right.

The survey was delivered by both paid and volunteer pollsters to students voting in student representative council elections at the university this week. It claimed to be “approved in principle by the University of Sydney’s ethics committee” and “endorsed by the political science department.”
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A University of Sydney spokeswoman said the university had “very strong concerns” about the content of the survey, which it was not aware of until contacted by the Herald on Wednesday, and how it was delivered.
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“An initial inquiry indicates ethics approval was not obtained for the study and our logo has been used without permission,” the spokeswoman said. “We are formally contacting the staff and student involved today to advise them the matter may be subject to disciplinary proceedings.”
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Read the rest of this news story

How to Boost Racial, Ethnic and Gender Diversity in Clinical Research (Report – Syneos: September 2019)0

Posted by Admin in on October 6, 2019
 

Why All Stakeholders Must OWN The Mission
Healthcare transformations take time—and the time lag has consequences.

While this item and the accompanying report are decidedly US-centric, the issues are fundamental and global.  AHRECS Consultant Nik Zeps will be part of a panel discussion at the clinical oncology meeting in Adelaide in November 2019 debating this for the Cancer Council Victoria.

It has been 25 years since Congress passed the National Institutes of Health Revitalization Act requiring federally funded clinical research programs to prioritize inclusion of women and minorities. Since then, both the NIH and the Food and Drug Administration have mounted numerous initiatives, including regulatory guidance aimed at shoring up the law’s intent.
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Despite parallel efforts by biopharmaceutical innovators, the demographics of clinical trials today still do not reflect the racial, ethnic or gender diversity of target patient populations around the world. This is true for trial subjects, of whom an estimated 83 percent are white. And it’s true for the race/ethnicity/gender representation of investigators at many trial sites as well.

As advanced health systems around the world enter an era of genomic and precision medicine, lack of diversity across the clinical research landscape is a daunting obstacle.

Access this discussion piece and report

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.

Read the rest of this discussion piece

The Publishing Trap (A game by UK Copyright Literacy | October 2017)0

Posted by Admin in on September 22, 2019
 

Introduction
The Publishing Trap is a board game from the UK Copyright Literacy team that allows participants to explore the impact of scholarly communications choices and discuss the role of open access in research by following the lives of four researchers – from doctoral research to their academic legacies. It is a full functioning, prototype game first developed in 2016 when it won a runner’s up prize at the LILAC Lagadothon. However, the game has evolved considerably since then.

A great research outputs/academic career game, produced by UK Copyright Literacy that is an engaging and informative alternative to ‘chalk and talk’ workshops.

Aim of the Game
The Publishing Trap is a game about research dissemination and scholarly communication in Higher Education. The game follows the academic career of four characters who at each stage in their career, from PhD submission, through to Professorship, are presented with a series of scenarios about which they have to make choices. The characters make decisions about how to disseminate their research at conferences, in academic journals and in monographs or textbooks. Ultimately the game helps researchers to understand how money, intellectual property rights, and both open and closed publishing models affect the dissemination and impact of their research. Through playing the game in teams, players get to discuss the impact of each character’s choices. The game ends at the end of the character’s life, when players sees the consequences of the choices they have made in terms of money, knowledge and impact.
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The Audience
The Publishing Trap is aimed at early career researchers and academics, as well as anyone who has a vested interested in understanding how access to information works and how the whole scholarly communication system in higher education operates. Although it is not intended to promote any particular ideological position, it should be valuable to staff who are advocating for a greater acceptance of open access publishing models and trying to encourage academic staff to make informed choices when they sign publishing contracts and submit their work to the institutional repository.
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Access the game’s web site

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