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

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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies (Papers: Dianne Rios, et al | November 2016)0

Posted by Admin in on July 25, 2019
 

Abstract

People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to “accessible research design”—research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

Rios, D., Magasi, S., Novak, C. & Harniss, M. Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies, American Journal of Public Health 106, no. 12 (December 1, 2016): pp. 2137-2144.
https://doi.org/10.2105/AJPH.2016.303448
Publisher: https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2016.303448

The Rise of Junk Science – The Walrus (Alex Gillis | July 2019)0

Posted by Admin in on July 23, 2019
 

Fake publications are corrupting the world of research—and influencing real news

In early 2017, Eduardo Franco, a professor in the Faculty of Medicine at McGill University, sent an email to his colleagues, warning them of a global “epidemic” of scams by academic journals that was corrupting research and, in effect, endangering the public. As head of the oncology department, where he oversees approximately 230 people, Franco promised to comb through every CV and annual evaluation in the department to flag any colleagues’ resumés that listed journals and conferences that weren’t reputable or, in some cases, even real. He didn’t spell out the consequences, but the implication was clear: the faculty members would be held accountable.

The AHRECS team have started to observe this worrying trend in our other roles.  It is essential research institutions direct researchers (via policy, guidance material and professional development strategies) away from junk science.  Funding bodies also need to play a key role in this regard.

A scholar for forty years, Franco has followed the rise of junk publishers for about a decade. He has seen them go from anomalous blights on academics’ credentials to widespread additions on scholarly resumés, nearly indistinguishable from legitimate work. Now, he says, “there’s never been a worse time to be a scientist.” Typically, when a scholar completes work they want to see published, they submit a paper to a reputable journal. If the paper is accepted, it undergoes a rigorous editing process—including peer review, in which experts in the field evaluate the work and provide feedback. Once the paper is published, it can be cited by others and inspire further research or media attention. The process can take years. Traditionally, five publishers have dominated this $25 billion industry: Wiley-Blackwell, Springer, Taylor & Francis, RELX Group (formerly Reed Elsevier), and Sage. But, before the turn of the century, a new model of online publishing, “open access,” began opening doors for countless academics—and for thousands of scams in the process.
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The new online model created an opportunity for profits: the more papers publishers accepted, the more money they generated from authors who paid to be included—$150 to $2,000 per paper, if not more, and often with the support of government grants. Researchers also saw substantial benefits: the more studies they posted, the more positions, promotions, job security, and grant money they received from universities and agencies. Junk publishers—companies that masquerade as real publishers but accept almost every submission and skip quality editing—elbowed their way in.
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Journal Publishes Concern About Study Using Forced Organ Donation – Medscape (Diana Swift | June 2019)0

Posted by Admin in on July 21, 2019
 

The Clinical Journal of the American Society of Nephrology (CJASN) recently issued an “Expression of Concern” regarding a 2008 article on renal allograft recipients written by Chinese researchers.

The Expression of Concern stems from an Australian report published online in February in BMJ Open, which urged the repudiation by English-language journals of more than 445 studies involving 85,477 organ transplants done in China. The reason? Many of the organs used were likely forcibly harvested from Chinese prisoners of conscience, such as practitioners of Falun Gong, Uyghurs, Tibetans, and underground Christians.

“We reached out for clarification of the organ source to the senior authors, but one was deceased and the other had left the institution where the research was done,” said CJASN Editor-in-Chief Rajnish Mehrotra, MD, MBBS, a professor of medicine at the David Geffen School of Medicine at University of California Los Angeles.

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A Russian Biologist Wants To Create More Gene-Edited Babies – NPR (Rob Stein | June 2019)0

Posted by Admin in on July 20, 2019
 

A Russian scientist says he wants to create more genetically modified babies, flouting international objections that such a step would be premature, unethical and irresponsible.

Denis Rebrikov, a molecular biologist who heads a gene-editing lab at the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology in Moscow, claims he has developed a safe — and therefore acceptable — way to create gene-edited babies.

“How it can be unethical if we will make [a] healthy baby instead of diseased?” Rebrikov told NPR during his first broadcast interview. “Why? Why [is it] unethical?”

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