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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

On “truly” understanding the risk – The Ethics Blog (Pär Segerdahl | March 2019)0

Posted by Admin in on March 28, 2019
 

Pär SegerdahlIt is a well-known psychological fact that people have great difficulties to understand probabilistic risks. What does it actually mean that the risk of developing breast cancer the next ten years is fifteen percent? In addition to the difficulties of understanding probabilities, mathematical expressions can cause a false appearance of exactitude and objectivity. It is often about uncertain evaluations, but expressed in seemingly definitive figures.

At our Monday seminar, Ulrik Kihlbom discussed another difficulty with understanding risk information. It can be difficult to understand not only the probabilities, but also what it is you risk experiencing. Sometimes, people face enormously complex choices, where the risks are high, but also the benefits. Perhaps you suffer from a serious disease from which you will die. However, there is a treatment, and it may work. It is just that the treatment has such severe side effects that you may die even from the treatment.

Ulrik Kihlbom interviewed physicians treating patients with leukemia. The doctors stated that patients often do not understand the risks of the treatment they are offered. The difficulty is not so much about understanding the risk of dying from the treatment. The patients understand that risk. However, the doctors said, no one who has not actually seen the side effects understand that the treatment can make you so incredibly ill.

Read the rest of this discussion piece

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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Organ transplants from executed Chinese prisoners and research ethics – Radio National ABC (Norman Swan | February 2019)0

Posted by Admin in on March 5, 2019
 

Macquarie University researchers say hundreds of journal papers in the transplant field don’t follow ethical guidelines in declaring whether or not their research includes transplants from executed prisoners in China.

The researchers want the papers retracted, saying it creates a moral hazard for the entire field of research.

Guest:
Professor Wendy Rogers

Access the page | Download/stream the audio | Access the transcript

Whitepaper: Practical challenges for researchers in data sharing (David Stuart, et al | September 2018)0

Posted by Admin in on March 4, 2019
 

Whitepaper, survey data and infographic on figshare.com

In one of the largest surveys of researchers about research data (with over 7,700 respondents), Springer Nature finds widespread data sharing associated with published works and a desire from researchers that their data are discoverable.

Foreword

We are in the midst of progress, and potentially exciting change, for open science and open access to research data. The world’s funders are increasingly mandating good data practice, including data management plans and data sharing, and recognising the need for global collaboration on infrastructure and best practice. Across the research community, momentum is gathering in policy, strategy and working groups to achieve a future where research data are widely Findable, Accessible, Interoperable and Reusable (FAIR).

Open science should be about opening up all areas of research. Open access to research data can help speed the pace of discovery and deliver more value for funded research by enabling reuse and reducing duplication. The evidence is there that open data and good data management makes research studies more productive, more likely to be cited and unlocks innovation for the good of society including unexpected new discoveries and economic benefit…

Stuart, D., Grace Baynes, S., Hrynaszkiewicz, I., Allin, K., Penny, D., Lucraft, M & Astell, M. (2018) Whitepaper: Practical challenges for researchers in data sharing. Springer nature
Figshare: https://figshare.com/articles/Whitepaper_Practical_challenges_for_researchers_in_data_sharing/5975011/1
Publisher (Includes media release): https://www.springernature.com/gp/open-research/open-data/practical-challenges-white-paper

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