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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users (Papers: Alexandra Soulier | June 2019)0

Posted by Admin in on April 13, 2020

Biobanks are not new. However, the scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic samples to be made available for different types of studies. Some future uses of the biobanks cannot be anticipated.

Soulier, A. (2019) Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users. IEEE Technology and Society Magazine, 38(2) 62-70, June 2019.

Strong caveats are lacking as news stories trumpet preliminary COVID-19 research – HealthNewsReview (Mary Chris Jaklevic | April 2020)0

Posted by Admin in on April 12, 2020

For years medical researchers held off while scientists in other fields embraced online platforms for posting rough drafts of manuscripts, known as preprints.

The hurried pace and publication of COVID-19 research means mistakes are going to be made.  This vexed situation, where data is being rushed out to meet a need-but there is not time to verify using standard means.  Over the last 24h we have posted some great pieces offering an important warning.

Those websites accelerate basic science by allowing researchers to disseminate findings and get feedback on their work before submitting them to a traditional journal.

Some argue that such rapid data sharing is ideally suited for infectious disease outbreaks like the one we’re experiencing now.

However, the prospect of public access to unvetted work sparked worry about potential health scares and patients demanding unproven treatments. A BMJ editorial put it this way: “Can the need for speed be balanced with suitable safeguards to protect the public?”

We’re now finding out.

A medical preprint server called medRxiv (pronounced “med-archive”) went live last summer. It’s a partnership of BMJ (publisher of The BMJ), Yale University, and Cold Spring Harbor Laboratory.


Read the rest of this discussion piece

The Science of This Pandemic Is Moving at Dangerous Speeds – WIRED (Adam Marcus & Ivan Oransky | March 2020)0

Posted by Admin in on April 12, 2020

Much of the research that emerges in the coming weeks will turn out to be unreliable, even wrong. We’ll be OK if we remember that.

THE TRUMP ADMINISTRATION has made many stumbles in its response to the coronavirus pandemic, but one of the key failures was not having enough kits to test for the pathogen once it appeared in the United States. Instead of accepting kits from other countries—including the ones approved by the World Health Organization—the White House went its own way.

On March 17, Deborah Birx, the physician coordinating the administration’s scientific response to the Covid-19 outbreak in the United States, tried to explain the rejections. “It doesn’t help to put out a test where 50 percent or 47 percent are false positives,” Birx told reporters, suggesting that at least some overseas tests were deeply flawed. A few days later, FDA commissioner Stephen Hahn again mentioned the 47-percent error rate in an interview with National Public Radio, attributing it to “an abstract that was recently published in the literature.” He continued: “What that means is that if you had a positive test, it was pretty close to a flip of a coin as to whether it was real or not.

That sounds reasonable. After all, a test that is no better than a coin flip would do far more harm than good, burdening an already overwhelmed health care system with a tidal wave of well but worried people. Birx is a highly respected scientist whose résumé includes taking on the AIDS epidemic, and Hahn heads perhaps the nation’s most important health agency. But in this case, they appear to have relied on data that, for reasons that are still unclear, has been withdrawn from the scientific literature

Read the rest of this discussion piece

Science Communications In the Time of Coronavirus – WYNC Studios (March 2020)0

Posted by Admin in on April 12, 2020

We are all now, it seems, amateur epidemiologists, trying to find a way past the contagion that’s overturned our lives. We follow the headlines: A blood test that may detect coronavirus antibodies. Potential treatments for the associated pneumonia. You might learn about breakthroughs on Twitter or Facebook, but often they first appear on what are called preprint servers. In fact, Ivan Oransky, professor of medical journalism at NYU and co-founder of Retraction Watch, says that many of the purported breakthroughs around the virus are being shared in spaces that are unfamiliar to many civilians, and mostly unvetted. Here, Oransky explains to Brooke why these preprints — which have been so essential for scientists sharing their research and data — should, as with all science publishing, be approached with some skepticism.

This is a segment from our March 27, 2020 program, Playing The Hero.

Access the page and stream or download the file