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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(US) UCSD has not told women with HIV of data breach, despite researchers’ pleas – inewsource (Jill Castellano & Brad Racino | May 2019)0

Posted by Admin in on June 22, 2019
 

University of California San Diego officials stonewalled attempts to notify women in an HIV research study that their confidential data was breached more than seven months ago, an inewsource investigation has found.

The commentary sidebar on the inewsource website sums up well why this is a big deal. If the story is correct, the breach is serious enough, but the failure to warn the women was a complete betrayal of trust.

UCSD researchers conducting the EmPower Women study told university officials in October that participants’ names, audio-taped conversations and other sensitive materials were made accessible to everyone working at Christie’s Place, a San Diego nonprofit supporting women with HIV and AIDS. They called the situation “very serious” and said the women affected are “within one of the most vulnerable and marginalized populations.”
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But internal emails, reports and meeting minutes chronicle months of communication between lead researcher Jamila Stockman — who pushed for telling two dozen women enrolled in the project about the breach — and UCSD officials concerned about the consequences.
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How Do You Publish the Work of a Scientific Villain? – WIRED (Megan Molteni | December 2018)0

Posted by Admin in on June 11, 2019
 

HOW DO YOU handle the data of a scientist who violates all the norms of his field? Who breaches the trust of a community that spans the entire globe? Who shows a casual disregard for the fate of the whole human species?

On the one hand, you might want to learn from such a person’s work; to have a full and open dissection of everything that went wrong. Because, spoiler, there was a lot that went wrong in the case in question. But rewarding such “abhorrent” behavior, as one scientist put it, with a publication—the currency of the scientific world—would send a message that ethical rules only exist to be broken.

This is the precarious situation in which we find ourselves today, as scientists hash out the next chapter of the human gene-editing scandal that erupted two weeks ago, when the Chinese scientist He Jiankui revealed that for the last two years he has been working in secret to produce the world’s first Crispr-edited babies. Scientists denounced the work with near-unanimous condemnation, citing its technical failures as well as its deep breaches of ethical (and possibly legal) lines. What’s much less certain is what should happen to the work, now that it’s been done.

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“Our current approaches are not working:” Time to make misconduct investigation reports public, says integrity expert – Retraction Watch (Ivan Oransky | June 2019)0

Posted by Admin in on June 9, 2019
 

With the 6th World Conference on Research Integrity (WCRI) underway in Hong Kong, C.K. Gunsalus, who has served as a research integrity officer, expert witness in scientific integrity cases, and consultant, argues in Nature this week that universities should “Make reports of research misconduct public.” We asked her a few questions about why she has changed her mind about this issue.

Retraction Watch (RW): We have of course been campaigning for universities to release investigation reports for some time, and have published a number of them following public records requests and reviews of court documents. What led you to this call to make them public?

C.K. Gunsalus (CKG): I argued the opposite position for many years, decades, even. What led me to this call is that our current approaches are not working: not for credibility of investigations, not for reinforcing research integrity, not for protecting the integrity of the research community.

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(US) ‘Banished’ blood, stool samples from San Diego veterans used in research article, despite federal probe – ienewsource (Brad Racino & Jill Castellano | May 2019)0

Posted by Admin in on June 6, 2019
 

Two prominent doctors associated with the University of California San Diego and the local VA used blood and stool samples taken from sick veterans to bolster a paper published this month in an academic research journal.

The specimens were not supposed to be used, according to the project’s lead researcher, because they were part of a study that unethically collected biological samples from living subjects without their consent, which investigators called “serious noncompliance.”

When people volunteer to be human research subjects, they accept potential health risks in order to contribute to a growing bank of scientific and medical knowledge.

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