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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Cambridge Analytica controversy must spur researchers to update data ethics – Nature (Editorial | March 2018)0

Posted by Admin in on March 30, 2018

A scandal over an academic’s use of Facebook data highlights the need for research scrutiny.

Revelations keep emerging in the Cambridge Analytica personal-data scandal, which has captured global public attention for more than a week. But when the dust settles, researchers harvesting data online will face greater scrutiny. And so they should.

At the centre of the controversy is Aleksandr Kogan, a psychologist and neuroscientist at the University of Cambridge, UK. In 2014, he recruited people to complete a number of surveys and sign up to an app that handed over Facebook information on themselves — and tens of millions of Facebook friends. Kogan passed the data to SCL, a UK firm that later founded controversial political-consultancy firm Cambridge Analytica in London. (All those involved deny any wrongdoing.)

Last week, Facebook announced restrictions on data harvesting by third parties, including drastically reducing the kinds of information that app developers can access. (It had already changed its rules in 2014 to stop developers gleaning data from users’ friends through their apps.) But damage has been done: the public has good reason to be angry about the way in which researchers and companies have seemingly used personal data without consumers’ full understanding or consent.

Read the rest of this discussion piece


Facebook scandal: I am being used as scapegoat – academic who mined data – The Guardian (Matthew Weaver | March 2018)0

Posted by Admin in on March 22, 2018

The academic at the centre of Facebook’s data breach claims he has been unfairly scapegoated by the social network and Cambridge Analytica, the firm that acquired the information.

Portland State University Researchers May Have Violated Federal Law by Using the Personal Data of Thousands of Portland-Area K-12 Students – Williamette Week (Katie Shepherd | March 2018)0

Posted by Admin in on March 13, 2018

It appears to be a remarkable breach of trust.

Plenty of graduate students dislike the research assignments handed to them by professors.

Stories like this highlight there is media interest not only in what we research but also the ethics of our research. For SoTL researchers this emphasizes the need to be careful not to breach the trust of our students and to use care about matters such as privacy and consent. AHRECS was funded by the OLT to produce a few resource booklets about research ethics in SoTL research

Ezra Whitman, a graduate student in the 2017 class at Portland State University, had a different problem with the homework he was given. He said it broke the law.
“I didn’t want to do it, period,” says Whitman. “It didn’t meet research best practices in any aspect. [We were] illegally harvesting data.”
For two years, professors at PSU’s Graduate School of Education conducted a research project using unwitting K-12 students as subjects. The university has since acknowledged it failed to inform parents of the research and did not get their permission to access the student data. University officials say they are still examining whether any laws were broken.


Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond (Papers: Go Yoshizawa, et al | 2017)0

Posted by Admin in on February 11, 2018

The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases.

Keywords: medical genomics, consent documents, group consent, family consent, community engagement

Yoshizawa G, Sasongko TH, Ho C-H and Kato K (2017) Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond. Frontiers in Genetics. 8:99. doi: 10.3389/fgene.2017.00099
Publisher (Open Access):….