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(Australia Queensland case) Universal Medicine research conducted by devotees won’t be pulled by Queensland uni – ABC (Josh Robertson | March 2019)0

Posted by Admin in on March 25, 2019
 

A top Australian university has stood by studies into the health benefits of a group that a jury found was a “dangerous cult” making false healing claims, despite its own medical researchers failing to disclose they were devotees.

The investigation finding, as reported by the ABC, isn’t the most bewildering/troubling element of this case – but it’s pretty close.

A 10-month investigation by the University of Queensland (UQ) has cleared the researchers of academic misconduct despite finding they did not fully detail their involvement with Universal Medicine (UM).
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The studies were published in overseas journals and explored the benefits of UM treatments including “esoteric breast massage” and proposed clinical studies in Vietnamese hospitals that would be forbidden in Australia.
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Academic Behind Cambridge Analytica Data Mining Sues Facebook for Defamation – New York Times (Matthew Rosenberg | March 2019)0

Posted by Admin in on March 24, 2019
 

WASHINGTON — The academic who helped Cambridge Analytica vacuum up private information from tens of millions of Facebook profiles sued the social media giant on Friday, arguing that the company defamed him when it claimed he had lied about how the data was going to be used.

Since the full scope of Cambridge Analytica’s data mining was revealed last year, Facebook has repeatedly tried to shift blame for the privacy breach onto the academic, Aleksandr Kogan. Facebook executives — including the chief executive, Mark Zuckerberg — have said Mr. Kogan told Facebook that the data was for academic purposes when it was being collected for use in political campaigns.

Mr. Kogan, 32, a former psychology professor, used a quiz app to collect the data, and has insisted that the fine print accompanying his app said the information could be used commercially. That was an outright violation of Facebook’s rules at the time, but the company does not appear to have regularly checked that apps were complying.

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New call to ban gene-edited babies divides biologists – Science (Jon Cohen | March 2019)0

Posted by Admin in on March 15, 2019
 

A prominent group of 18 scientists and bioethicists from seven countries has called for a global “moratorium” on introducing heritable changes into human sperm, eggs, or embryos—germline editing—to make genetically altered children. The group, which published a commentary in Nature today, hopes to influence a long-standing debate that dramatically intensified after China’s He Jiankui announced in November 2018 that he used the genome editor CRISPR to try to alter the genes of babies to be resistant to the AIDS virus.

The consequences of inheritable gene line editing for humanity and the arguments for continued research/treatments for inheritable diseases are not simple matters, but they need to be approached thoughtfully. Arguing over the semantics of the word moratorium isn’t helpful. We have included the call in Nature for a moratorium and a list of related items.

Their call, which is endorsed in the same issue of Nature by Francis Collins, director of the U.S. National Institutes of Health, is a departure from statements issued by two global summits on genome editing in 2015 and 2018, a 2017 report from the U.S. National Academies of Sciences, Engineering, and Medicine (NASEM), and a 2018 report from the United Kingdom’s Nuffield Council on Bioethics. None has banned human germline editing, and most have stressed that it holds promise to help correct some heritable diseases. All have warned against using germline editing for cognitive or physical “enhancement” of people. Scientists including Nobel laureate David Baltimore of the California Institute of Technology in Pasadena remain opposed to a moratorium. Even in the wake of the He incident, Baltimore, who helped organize the summits, denounced such a ban as “draconian” and “antithetical to the goals of science.”
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Any nation that wants to greenlight a human germline edit by its scientists, the 18 authors declare, should have to give public notice, engage in an international and transparent assessment of whether the intervention is justified, and make sure the work has broad support in their own nation. “Nations might well choose different paths, but they would agree to proceed openly and with due respect to the opinions of humankind on an issue that will ultimately affect the entire species,” they write. They strongly encourage that nonscientific perspectives, including those of people with disabilities and religious groups, be included in the discussion. And they stress that they are not calling for a moratorium on genome editing of somatic cells, which would not affect future generations.
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Presenting and representing others: towards an ethics of engagement (Papers: Lucy Pickering and Helen Kara | February 2017)0

Posted by Admin in on March 14, 2019
 

Abstract
The ethics of research representation are rarely discussed. Yet representation can have a significant impact on research participants and audiences. This paper draws on some of the limited body of accounts of ethical challenges experienced in representing others in qualitative research. These accounts make clear that researchers often have to choose between ‘competing goods’ when representing others, such as participant control over what is presented and how, researchers’ ‘interpretive authority’, and whether and how to represent participants’ speech. These decisions frequently involve researchers choosing between ‘literal’ (empirical, evidence-based) and ‘real’ (authentic, experiential) truths. To resolve these dilemmas, some researchers are turning to creative methods of representation, such as poems, songs, plays and dance. Like all forms of representation, these methods require compromise: in particular, some detail, depth, or location may be sacrificed in return for accessible engagement with participants and wider audiences. Conversely, traditional methods of presentation may sacrifice some scope for engagement and accessibility in return for greater detail and depth. We argue that such sacrifices are a necessary component of all forms of qualitative representation and consequently require a reflexive approach to choices about representation. It is this reflexive approach which we argue constitutes an ethics of engagement.

Keywords
Ethics, presentation, representation, reflexivity, engagement

Pickering, L., and Kara, H. (2017) Presenting and representing others: towards an ethics of engagement. International Journal of Social Research Methodology, (doi:10.1080/13645579.2017.1287875)
https://core.ac.uk/download/pdf/77601396.pdf

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