AO. Mismatch in stated desires + paperwork

AO. Despite stating their desire to be anonymous, participant #KPKMU09 wrote out their whole name in a legible format on the consent form. (I had given verbal directions to those who wished to be anonymous not to write in their names and stated that I would write in a participant number instead afterwards). Ideally, this form should have been redesigned so as not to ask for names if one wishes to be anonymous. But as it was the officially approved IRB form, this example illustrates some of the cracks where formal mechanisms for protection may not be sufficient. It would not be hard to imagine how a larger sample size and less careful attention to explicit/implict patient desires and individual/collective risks might lead to a bulk uploading of such consent forms and increased exposure to individual and collective risks. Thus, taking the practices as I attempted in this project as "best practice" and scaling them up in other projects may not in fact be advisable nor desirable. I hope this example helps reveal the entanglements caught up in concepts like Open Data and how such "experiments" within the ethnographic endeavor (asking participants for their desired level of sharing, uploading and sharing materials including consent forms) should be seen as emergent forms rather than fixed targets or clear criteria to be achieved within careful consideration.


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