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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Fudged research results erode people’s trust in experts – The Conversation (Gavin Moodie | July 2019)0

Posted by Admin in on August 11, 2019
 

Reports of research misconduct have been prominent recently and probably reflect wider problems of relying on dated integrity protections.

The recent reports are from Retraction Watch, which is a blog that reports on the withdrawal of articles by academic journals. The site’s database reports that journals have withdrawn a total of 247 papers with an Australian author going back to the 1980s.

This compares with 324 papers withdrawn with Canadian authors, 582 from the UK and 24 from New Zealand. Australian retractions are 1.2% of all retractions reported on the site, a fraction of Australia’s 4% share of all research publications.

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Using ASCO’s Clinical Database for Commercial Research Raises Questions, Ethicists Say – Medscape (Ellie Kincaid | May 2019)0

Posted by Admin in on August 8, 2019
 

Eleven abstracts of the thousands accepted for publication at this year’s annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest cancer research conferences in the world, draw upon data collected through a nonprofit subsidiary of ASCO that in 4 years has brought together the electronic health records (EHRs) of 1.2 million patients.

The ASCO subsidiary — CancerLinQ — will have its own 1200 square foot booth in prime real estate at the entrance to the meeting’s exhibit hall. It has received data from 48 healthcare institutions to help them improve care for patients and has compiled a treasure trove of data for researchers studying how expensive cancer drugs work for patients in the real world. But ethicists are concerned that CancerLinQ is allowing companies to sell access to the data after they have been stripped of patient identifiers, without asking for patients’ permission.

“I think that the ethics of profiting off of someone else’s information is dicey and at the very least the patient should go in with their eyes open, and that requires informing them,” said Robert Field, PhD, MPH, JD, a professor of law and public health at Drexel University, Philadelphia, Pennsylvania.

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Friday afternoon’s funny – Data Food Chain0

Posted by Admin in on May 31, 2019
 

Cartoon by Don Mayne www.researchcartoons.com

To extend the metaphor into unsavoury territory one can only imagine the images for data archiver, the output publisher/editor, peer reviewers and readers.  And an auditor… Ewww On that pleasant note, have a great weekend!

(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)0

Posted by Admin in on April 19, 2019
 

Forty years on from a foundational report on how to protect people participating in research, cracks are showing, warns Nathaniel Raymond.

One of the primary documents aiming to protect human research participants was published in the US Federal Register 40 years ago this week. The Belmont Report was commissioned by Congress in the wake of the notorious Tuskegee syphilis study, in which researchers withheld treatment from African American men for years and observed how the disease caused blindness, heart disease, dementia and, in some cases, death.

This item obviously relates very specifically to the origins of the US human research ethics arrangements and the operation of IRBs, but the questions it poses are salient to Australasia.  The oft repeated statement: “But the information is already published and so is in the public domain and so is exempt”.  Is no longer helpful. We have provided a list of related items.

The Belmont Report lays out core principles now generally required for human research to be considered ethical. Although technically governing only US federally supported research, its influence reverberates across academia and industry globally. Before academics with US government funding can begin research involving humans, their institutional review boards (IRBs) must determine that the studies comply with regulation largely derived from a document that was written more than a decade before the World Wide Web and nearly a quarter of a century before Facebook.
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It is past time for a Belmont 2.0. We should not be asking those tasked with protecting human participants to single-handedly identify and contend with the implications of the digital revolution. Technological progress, including machine learning, data analytics and artificial intelligence, has altered the potential risks of research in ways that the authors of the first Belmont report could not have predicted. For example, Muslim cab drivers can be identified from patterns indicating that they stop to pray; the Ugandan government can try to identify gay men from their social-media habits; and researchers can monitor and influence individuals’ behaviour online without enrolling them in a study.
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