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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

New curriculum prioritizes tribal sovereignty, cultural respect in scientific research of American Indian, Alaska Native communities – UW News (Kim Eckart | February 2018)0

Posted by Admin in on March 27, 2018

When scientists have conducted research in Native American communities, the process and the results have sometimes been controversial.

There have been a few well-known cases, such as the 1979 Barrow Alcohol Study, in which researchers examined substance use in the tiny Arctic Circle town and issued findings to the press, before briefing the local community. Media coverage interpreting the findings described an “alcoholic” society of Iñupiats “facing extinction,” while the people of Barrow (now known as Utqiaġvik) felt betrayed, and researchers faced questions and criticism.

Then in 1990, members of the Havasupai Tribe gave DNA to an Arizona State University researcher for the study of diabetes; when they learned their blood samples had been used for other studies as well, they filed a lawsuit, ultimately winning a financial settlement and the return of their DNA.

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Continuing Steps to Ensuring Credibility of NIH Research: Selecting Journals with Credible Practices – Extramural Nexus (Mike Lauer | November 2017)0

Posted by Admin in on January 6, 2018

The scientific community is paying increasing attention to the quality practices of journals and publishers. NIH recently released a Guide notice (NOT-OD-18-011) to encourage authors to publish in journals that do not undermine the credibility, impact, and accuracy of their research findings. This notice aims to raise awareness about practices like changing publication fees without notice, lacking transparency in publication procedures, misrepresenting editorial boards, and/or using suspicious peer review.

A tangible sign of a funding body responding to the impact of disreputable publishers. This is the fourth and final instalment in our recent resources about the scourge of illegitimate publishers. With our thanks to Julie Simpson for sharing a link to this item on Twitter.

This may not be a big problem for NIH-funded publications now; our colleagues Jennifer Marill, Kathryn Funk, and Jerry Sheehan from the National Library of Medicine note that more than 90% of the 815,000 publicly available journal articles reporting on NIH-funded research are published in MEDLINE indexed journals. Nonetheless, we do know that a problem exists – there are articles reporting NIH-funded research appearing in journals that engage in questionable practices. Ensuring the credibility of NIH funded research is important to maintaining public trust in research.

NIH has taken—and continues to take—many steps to ensure the credibility of the research it supports. From enhancing rigor and reproducibility, to encouraging sharing of data and protocols, to promoting pre-prints, and to requiring timely registration and reporting of clinical trial results, NIH establishes policies to make our funded research as credible, transparent, rigorous, and full of impact as possible.

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Also see:
In a world of hijacked, clone and zombie publishing, where shouldn’t I publish?
Examining publishing practices: moving beyond the idea of predatory…
Continuing Steps to Ensuring Credibility of NIH Research: Selecting Journals with…
Illegitimate Journals and How to Stop Them: An Interview with Kelly Cobey and…
Open access, power, and privilege

AI Research is in Desperate Need of an Ethical Watchdog – Wired (Sophia Chen | September 2017)0

Posted by Admin in on December 5, 2017

ABOUT A WEEK ago, Stanford University researchers posted online a study on the latest dystopian AI: They’d made a machine learning algorithm that essentially works as gaydar. After training it with tens of thousands of photographs from dating sites, the algorithm could perform better than a human judge in specific instances. For example, when given photographs of a gay white man and a straight white man taken from dating sites, the algorithm could guess which one was gay more accurately than actual people participating in the study.* The researchers’ motives? They wanted to protect gay people. “[Our] findings expose a threat to the privacy and safety of gay men and women,” wrote Michal Kosinski and Yilun Wang in the paper. They built the bomb so they could alert the public about its dangers.

The increasing number of projects such as this highlight the degree to which AI research can be an unanticipated source of harm. Currently such work is unlikely to be submitted for research ethics review and the researchers will probably be unfamiliar with ethical considerations. Existing research ethics committees and institutional arrangements will be ill equipped to be helpful, but some kind of framework is required to provide researchers feedback on the ethics of their work.

Alas, their good intentions fell on deaf ears. In a joint statement, LGBT advocacy groups Human Rights Campaign and GLAAD condemned the work, writing that the researchers had built a tool based on “junk science” that governments could use to identify and persecute gay people. AI expert Kate Crawford of Microsoft Research called it “AI phrenology” on Twitter. The American Psychological Association, whose journal was readying their work for publication, now says the study is under “ethical review.”Kosinski has received e-mail death threats.

But the controversy illuminates a problem in AI bigger than any single algorithm. More social scientists are using AI intending to solve society’s ills, but they don’t have clear ethical guidelines to prevent them from accidentally harming people, says ethicist Jake Metcalf of Data & Society. “There aren’t consistent standards or transparent review practices,” he says. The guidelines governing social experiments are outdated and often irrelevant—meaning researchers have to make ad hoc rules as they go.

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Years before Heading Offshore, Herpes Researcher Experimented on People in U.S. – Scientific American (Marisa Taylor | November 2017)0

Posted by Admin in on November 28, 2017

Shots were administered in Illinois hotel rooms

Any account of clinical research that refers to agents being administered in a hotel room is unlikely to end on a positive note.

Three years before launching an offshore herpes vaccine trial, an American researcher vaccinated patients in U.S. hotel rooms in brazen violation of U.S. law, a Kaiser Health News investigation has found.

Southern Illinois University associate professor William Halford administered the shots himself at a Holiday Inn Express and a Crowne Plaza Hotel that were a 15-minute drive from the researcher’s SIU lab. Halford injected at least eight herpes patients on four separate occasions in the summer and fall of 2013 with a virus that he created, according to emails from seven participants and interviews with one participant.

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