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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Fining one ‘predatory’ publisher won’t fix the problem of bad science in journals – STAT (Adam Marcus | April 2019)0

Posted by Admin in on October 21, 2019
 

Science publishers aren’t supposed to be in the disinformation business. And that’s precisely what a federal judge in Nevada was saying late last month when she slapped OMICS International with a $50 million penalty in a suit brought by the U.S. Federal Trade Commission.

Judge Gloria M. Navarro agreed with regulators that OMICS, which publishes hundreds of journals and puts on scientific conferences, was guilty of “numerous express and material misrepresentations regarding their journal publishing practices.”

The ruling clearly is a win for honest brokers in scientific publishing. But it’s not the solution to the problem of so-called predatory journals — a term used to describe for-profit publications that pretend to offer peer review and editing but in reality do little, if any, of either.

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Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? (Papers: Mohammad Firdaus Abdul Aziz & Aimi Nadia Mohd Yusof | May 2019)0

Posted by Admin in on October 20, 2019
 

Abstract
As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big data. It is therefore imperative for biobanks to have in place regulatory measures to ensure ethical use of the biomedical big data. Malaysia has yet to introduce specific legislation for the field of biobanking. However, it can be argued that its existing Personal Data Protection Act 2010 (PDPA) has laid down legal principles that can be enforced to protect biomedical big data generated by the biobanks. Consent is a mechanism to enable data subjects to exercise their autonomy by determining how their data can be used and ensure compliance with legal principles. However, there are two main concerns surrounding the current practice of consent in biomedical big data in Malaysia. First, it is uncertain that the current practice would be able to respect the underlying notion of autonomy, and second, it is not in accordance with the legal principles of the PDPA. Scholars have deliberated on different strategies of informed consent, and a more interactive approach has recently been introduced: dynamic consent. It is argued that a dynamic consent approach would be able to address these concerns.

Keywords
Biobanking, Autonomy, Data protection, Informed consent, Dynamic consent

Abdul Aziz, Mohammad Firdaus, and Aimi Nadia Mohd Yusof. 2019. Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? Asian Bioethics Review 11 (2) 1-14.  https://doi.org/10.1007/s41649-019-00086-2.
Publisher: https://link.springer.com/article/10.1007%2Fs41649-019-00086-2

Advancing research integrity: a programme to embed good practice in Africa (Papers: Anke Rohwer, et al | 2019)0

Posted by Admin in on October 18, 2019
 

Abstract
In Africa, training programmes as well as institutional policies on research integrity are lacking. Institutions have a responsibility to oversee research integrity through various efforts, including policies and training. We developed, implemented and evaluated an institutional approach to promote research integrity at African institutions, comprising a workshop for researchers (“bottom-up”) and discussions with senior faculty on institutional policies (“top-down”). During the first day, we facilitated a workshop to introduce research integrity and promote best practices with regards to authorship, plagiarism, redundant publication and conflicts of interest. We used a variety of interactive teaching approaches to facilitate learning, including individual and group activities, small group discussions and case-based learning. We met with senior faculty on the following day to provide feedback and insights from the workshop, review current institutional policies and provide examples of what other research groups are doing. We evaluated the process. Participants actively engaged in discussions, recognised the importance of the topic and acknowledged that poor practices occurred at their institution. Discussions with senior researchers resulted in the establishment of a working group tasked with developing a publication policy for the institution. Our approach kick-started conversations on research integrity at institutions. There is a need for continued discussions, integrated training programmes and implementation of institutional policies and guidelines to promote good practices.

Keywords:
Research integrity, Africa, institution, publication policy, workshop

Rohwer, A., Wager, E. & Young, T. (2019). Advancing research integrity: a programme to embed good practice in Africa. Pan African Medical Journal. 33. 10.11604/pamj.2019.33.298.17008.
Publisher (Open Access): http://www.panafrican-med-journal.com/content/article/33/298/full/

(US) Google and the University of Chicago Are Sued Over Data Sharing – New York Times (Daisuke Wakabayashi | June 2019)0

Posted by Admin in on October 17, 2019
 

SAN FRANCISCO — When the University of Chicago Medical Center announced a partnership to share patient data with Google in 2017, the alliance was promoted as a way to unlock information trapped in electronic health records and improve predictive analysis in medicine.

On Wednesday, the University of Chicago, the medical center and Google were sued in a potential class-action lawsuit accusing the hospital of sharing hundreds of thousands of patients’ records with the technology giant without stripping identifiable date stamps or doctor’s notes.

The suit, filed in United States District Court for the Northern District of Illinois, demonstrates the difficulties technology companies face in handling health data as they forge ahead into one of the most promising — and potentially lucrative — areas of artificial intelligence: diagnosing medical problems.

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