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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Why Internet Scholars Are Calling Out Facebook for Restricting Access to Its Data – The Chronicle of Higher Education (Nell Gluckman | May 2018)0

Posted by Admin in on July 31, 2018

After news broke in March that a scholar had harvested data about millions of Facebook users and shared it with Cambridge Analytica, a political-consulting firm that advised the Trump campaign, the social-media company made some changes.

At first brush (especially if you are a Facebook user) you might be pleased to hear the platform is making it harder for players to access information about users, but as these comments by a QUT researcher illustrate – the changes might not mean what you might have assumed from the bold statements in the press. We’ve included links to other stories around research ethics and social media? Like the work we do compiling this information? Please become an AHRECS patron for 1-15USD per month.

Facebook announced plans to restrict outsiders’ access to user information. It also said that a select group of scholars would be granted unprecedented access to its data in a project that will be partly overseen by the Social Science Research Council.

The scholars will not be able to publish that information, but they will learn what the company will and won’t share with outside researchers and, presumably, why. They will then serve as a filter, meting out the data to researchers whose projects will seek to answer one question: How have social media influenced democracy?

Those announcements may sound like welcome changes to social-media users worried about their privacy. User data will be less accessible to outside companies and researchers who may have nefarious intentions, but trustworthy scholars will still be able to tap into the endless trove of information.
That’s the theory, at least. But some scholars of the internet say the new restrictions are actually a problem.
A group of those scholars last month published an open letter sounding the alarm. They also created a document listing research papers that would not exist, they say, under the new restrictions Facebook has imposed on the use of its data.


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The Ethics of Research on Leaked Data: Ashley Madison – Discover (Neuroskeptic | July 2018)0

Posted by Admin in on July 22, 2018

A paper just published reports that Republicans are more likely to have used the adultery website Ashley Madison than Democrats, while Libertarians were even more likely to do so.

Institutional and national research ethics review arrangements often exempt data that is already on the public record. Are you local arrangements nuanced enough to treat hacked and leaked data differently? An observation about the Ashley Madison data, which has been made before, is that while it’s a huge set of international data set in an area where data is notoriously hard to collect (infidelity) it actually has numerous flaws that probably makes it useless. We’ve included links to nine related items.

That’s a claim that could ruffle some feathers, but the way in which the researchers conducted this study might be even more controversial. That’s because this paper is based on the 2015 Ashley Madison data leak, which exposed the personal data, including names and credit-card details, of millions of registered users.
For this study, the authors, Kodi B. Arfer and Jason J. Jones, took the leaked data and matched it up against voter registration records for five U.S. states. They considered a voter to be an active Ashley Madison user if they had ever paid money to the website. About 1 in 500 voters met these criteria.
Those voters registered as Libertarians were most likely to be active users, even controlling for age, gender and state. Registered Republicans came next and Democrats were least likely.

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Science needs clarity on Europe’s data-protection law – Nature (May 2018 | Editorial)0

Posted by Admin in on July 21, 2018

As a commendable European law on personal data comes into force, the research community must not let excessive caution about data sharing, however understandable, become the default position.

European policymakers have been discussing new rules on data protection for years, and scientists and universities — like everyone else across the continent — are about to see the results. Entering into force on 25 May, a new law known as the General Data Protection Regulation (GDPR), is designed to protect the personal privacy of citizens and will overhaul how personal data are collected, handled, processed and stored. It’s a welcome move to safeguard individuals and is the biggest shake-up of data protection in more than 20 years.

Does your institution provide guidance to its researchers on the GDPR? The University Research Ethics Manual Gary Allen wrote will get a GDPR and National Statement (2018) update during the next few months. We included 10 links to other useful/interesting/topical items.

However, as this journal has noted before, earlier drafts of the law posed a problem for science and the research community. Of particular concern was the issue of consent — the draft language suggested researchers would be required to seek renewed consent to reuse data collected for a different purpose, which could have introduced delays and made some research impractical. But many in the research community worked relentlessly to warn policymakers of the potential harm. In response, officials put in place rules that exempt research from some of the requirements, provided the proper safeguards are in place. Universities and organizations have introduced plans to make sure they are. The bulk of the work should be done.

The passing of the final GDPR rules is, therefore, a good example of political engagement by researchers and their advocates, and a sensible and informed reaction from policymakers. Those involved, on both sides, deserve great credit. Harmonization of how data can be sourced, stored and used would, in theory, be good for research. It could smooth the difficulties that scientists face when they try to pool analysis of genomic data and tissue samples across national borders. Such sharing could help scientists to organize powerful trials with large numbers of participants.

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Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)0

Posted by Admin in on July 17, 2018


The idea of researchers building the trust of potential participants is sometimes viewed with caution (because of worry it will undermine the voluntary nature of participation) and scepticism (because of the time/resources required, that are needed to actually conduct the research). While such worries might seem reasonable, it is important to recognise: the historical experience of First Peoples and research has not been positive (and some of that ‘historical experience is fairly recent); Indigenous people are generally underrepresented in health research; and building trust is not only sound in terms of the ethical principle of Respect it’s likely to improve the usefulness of the results.

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.

Keywords: community review, Alaska Native, tribal, ethics, Native American, research, research conduct, trust, accountability

Hiratsuka, V. Y., Beans, J. A., Robinson, R. F., Shaw, J. L., Sylvester, I., & Dillard, D. A. (2017). Self-determination in health research: An Alaska Native example of Tribal ownership and research regulation. International Journal of Environmental Research and Public Health, 14(11), 1324.
Publisher (Open Access):