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(Australia) Medicare data used to recruit people with bipolar for research – Sydney Morning Herald (Kate Aubusson | July 2019)0

Posted by Admin in on July 29, 2019
 

A letter sent to almost 50,000 patients prescribed lithium inviting them to take part in a bipolar study has raised questions about how Medicare stores and uses private healthcare information.

Shocking cases like this highlight the need for caution when recruiting using data held by a third party.  Even if a strategy is legal, did the potential participants understand their information was being held in an identified form and consent to being contacted about participating in future research projects (even if, as in this case their information won’t be shared)?

UNSW psychiatrist Professor Gordon Parker first became aware of a study investigating the genetics of bipolar when a former patient sent him an angry email accusing him of breaching her privacy.
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“She was furious with me, believing that she was contacted by Medicare because I had blown her confidentiality,” he said.
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But the letter had been sent by the Department of Health Services (DHS) on behalf of a research team at QIMR Berghofer Medical Research Institute inviting recipients to participate in a study exploring potential biomarkers for bipolar disorder.
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Alarmed by new ‘CRISPR babies’ plan, top science figures say they’re powerless to stop it – STAT (Rick Berke | June 2019)0

Posted by Admin in on July 19, 2019
 

ASPEN, Colo. — Two influential leaders in science for the first time publicly condemned a Russian biologist who said he plans to produce gene-edited babies but conceded that it was beyond their organizations’ authority to halt him from doing so.

In separate interviews with STAT over the weekend, Margaret Hamburg, co-chair of an international advisory committee on human genome-editing, and Victor Dzau, president of the U.S. National Academy of Medicine, said they were deeply concerned by the plans outlined by Russian scientist Denis Rebrikov.

Still, said Hamburg, “I don’t know where we get the teeth to do some of what may ultimately need to be done’’ to respond in such situations.

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Tell the World – Exposing how China is creating the world’s largest prison – ABC Four Corners (July 2019)0

Posted by Admin in on July 16, 2019
 

On 15th July, ABC 4Corners ran a documentary examining develop the use of AI to profile and track activities non-Han populations in China. One Australian commentator argued that, in providing technical assistance, Australian universities were being ‘complicit in the human rights abuses’ (Assoc Prof James Leibold, La Trobe University). UTS told 4Corners that it was reviewing its relationships with a Chinese state-owned military tech company while Curtin is reviewing its research approval procedures.

Other universities may want to consider the mechanisms that they have that allow them to explore the ethics of the end use of technology that they develop and the degree to which it might be intended for or repurposed for the use of state security or military purposes. The biomedical literature has explored the dangers of dual use, but the 4Corners investigation pointed to problems that are much easier to anticipate, in this case work contracted directly with Australian university partners by Chinese state enterprises with military connections.

ASSOC PROF. JAMES LEIBOLD, ethnic policy in China, La Trobe University: I think… universities here in Australia that have connections with any Party State company, particularly in the military or security sector, needs to end those contracts, and to pull out of those collaborative arrangement. I mean, essentially by doing that, we’re being complicit in the human rights abuses that are occurring in Xinjiang and in China more widely.

EXCERPT FROM THE ITEM

“People started to literally disappear, communities were being emptied of adult men and women.” China researcher

It’s a remote corner of the world, but what is taking place there is nothing short of breathtaking.

“My older brother, younger brothers and two younger sisters, five siblings were all taken by… masked police. Heavily armed Special Forces police raided their home and taken (sic) them by covering their face and shackling them in front of the kids.” Australian Uyghur

Xinjiang province is a vast area of deserts and mountains where the ancient Silk Road once ran. Today its Uyghur population is being systematically rounded up with estimates of as many as a million citizens being held in detention.

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(Includes audio and transcript)

Credit data generators for data reuse – Nature (Heather H. Pierce, et al | June 2019)0

Posted by Admin in on July 14, 2019
 

To promote effective sharing, we must create an enduring link between the people who generate data and its future uses, urge Heather H. Pierce and colleagues.

Much effort has gone towards crafting mandates and standards for researchers to share their data1–3. Considerably less time has been spent measuring just how valuable data sharing is, or recognizing the scientific contributions of the people responsible for those data sets. The impact of research continues to be measured by primary publications, rather than by subsequent uses of the data.

To incentivize the sharing of useful data, the scientific enterprise needs a well-defined system that links individuals with reuse of data sets they generate4. To further this goal, the Association of American Medical Colleges (where H.H.P. and A.D. work) and the Multi-Regional Clinical Trials Center at Brigham and Women’s Hospital and Harvard Medical School (where E.S. and B.E.B. work), along with The New England Journal of Medicine, convened a 2018 workshop of representatives from 50 organizations to discuss and validate such a system. The workshop included major journals, funders, data-citation groups and academic centres (see Supplementary Information, Participant list) and was preceded by numerous meetings.

Here we propose a system for leveraging existing initiatives and infrastructure to track the use, reuse and impact of scientific data through the consistent adoption of unique identifiers. Our system begins when researchers deposit a data set that they have generated. It then links every use and published analysis of that data set back to the original researchers (see ‘Virtuous cycle’).

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