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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Consent for data on consent (Mollie Gerver | 2015)

Published/Released on December 28, 2014 | Posted by Admin on February 8, 2018 / , , ,

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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.

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