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Consent for data on consent (Mollie Gerver | 2015)0

Posted by Admin in on February 8, 2018

Mollie Gerver wanted to look at the transcript of interviews between an NGO and refugees in Israel who had apparently agreed to return to Sudan and South Sudan.

The NGO had responsibility for screening the refugees to make sure they had given informed consent to return. The NGO was happy to hand over the transcripts if Gerber contacted the returnees and gained their consent…

“Unfortunately, I could not contact all of those who returned. Many were killed, and others displaced, possibly contrary to what HIAS had promised. Others were living in extremely rural areas, unable to access telecommunications or safe and reliable roads, also living in conditions that were possibly different to what they expected prior to repatriating. Paradoxically, the reason many could not give their informed consent to disclose their data, meant to determine if they gave informed consent to repatriate, was precisely because they repatriated to a country without giving their informed consent.”

Let that sink in for a moment…

There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps a surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma

Gerver, Mollie (2015) Consent for data on consent. Ethical Theory and Moral Practice, 18 (4). pp. 799-816.

The Three Dilemmas of Data Gathering – Knowledge (Annet Aris | December 2017)0

Posted by Admin in on January 30, 2018

What companies do with customer data needs to be considered more closely.

“Alexa, order more tissues.”
“Siri, set a reminder to phone the doctor.”
“OK Google, turn on the light in the hallway upstairs.”

After an initial phase of euphoria about how the digital world improves our daily life with virtual assistants, among other gadgets and services, slowly but surely, we’re coming firmly back to earth. Post-honeymoon, the breakneck speed of digital development has created an increasing number of concerns. The societal debate is now focused, in particular, on our right to privacy and the increasing market power of the digital giants.

As digital personal assistants grow in popularity and become more enmeshed in our daily lives what are the ethical considerations for researchers purchasing data from the ‘Big Five’?

European politicians have meanwhile woken up. After a somewhat premature Dutch law limiting the cookies companies could install on computers, the European Union will implement the General Data Protection Regulation in 2018, providing European citizens with more transparency and control of their own data.
The activities of Google, Facebook and the rest of the Big Five are also now pursued critically with regard to abuse on several fronts, including market power, payment of taxes and news distribution, resulting in probes and fines by the EU and, in the United States, executives appearing before Congress.

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7 Things You Should Know About How Learning Data Impacts Privacy – ELI (Kent Wada, et al | May 2017)0

Posted by Admin in on January 11, 2018

Institutional programs and third-party vendors provide an expanding number of instructional tools and services that generate copious amounts of learning data. These data can be combined and shared to improve learning and increase student success, but these opportunities complicate the privacy landscape. Higher education may need new and perhaps more nuanced practices and policies concerning learning data usage and privacy. Although the answers are far from clear, institutions should initiate discussions and governance conversations if they haven’t already done so—the only real mistake is to do nothing.

The 7 Things You Should Know About… series from the EDUCAUSE Learning Initiative (ELI) provides concise information on emerging learning technologies. Each brief focuses on a single technology and describes what it is, where it is going, and why it matters to teaching and learning. Use these briefs for a no-jargon, quick overview of a topic and share them with time-pressed colleagues.

In addition to the 7 Things briefs, you may find other ELI resources useful in addressing teaching, learning, and technology issues at your institution. To learn more, please visit the ELI Resources page.

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Also see
The AHRECS resource booklets for SoTL research

Ethical issues concerning the recruitment of university students as research subjects (Papers: Albert F.G. Leentjens & James L. Levenson | 2013)0

Posted by Admin in on January 9, 2018

To discuss the ethical issues in the recruitment of university students as research subjects.

Narrative review and discussion.

The recruitment and inclusion of students in university research projects raise ethical issues specific to this population. Students may be required or coerced to participate, receive course credits for their participation, and their privacy may be violated. Some ethically questionable procedures are standard practice at some universities, and endorsed by their institutional review boards and faculties. Some changes will not be easy to achieve because this implies a change of organization of research and will affect funding and output.

The authors call for international standards to be set for research with students, that are in line with applicable standards in research with other subjects, such as medically ill patients, on which researchers, members of institutional review boards and editors can base their policies, opinions and decisions.

Ethics; Recruitment; University students

Leentjens, A. F., & Levenson, J. L. (2013). Ethical issues concerning the recruitment of university students as research subjects. Journal of psychosomatic research, 75(4), 394‐398.
Publisher (Open Access):

Also see:
The SoTL research ethics resource booklets produced by AHRECs