For this Briefing, Imagination Lancaster academic Dr Malé Luján Escalante (who, coincidentally, I once did a Mandarin course with) presented her research into
future data practices and
digital ethics in emergency response and health.
Her work has focused on developing a method by which to sepearate
human, understood as practice—
a cultural study of technology through co-creative methods. Primarily, she has been looking at
vulnerable data subjects—oftentimes not thoguht of by system designers—in particular dementia patients. This research has led to the cration of the isItEthical project, which
collects examples of ethical dilemmas and their workarounds in order to develop guidance.
Escalante suggested that there was a nomenclature issue at play in many of these discussions. For example,
privacy means something very different to a computer scientest than to her 13 year old son, and a
flood means something different to a farmer, to the Red Cross and to Public Health England. Criticising the situtation of having
a tiny weeny office for an ethical committee, with a boring form that allows you to do whatever you want after you are approved, Escalante was interested in moving away from the idea of ethics as a tickbox list and away from
problematic ideas of user-centered design.
The issue with this
user-centered design, thought Escalante, is that it usually uses
just one profile—Alan, usually male, white and Western. Instead, Escalante envisages a move to
ethics through design and
publicy rather than privacy. Through her isItEthical project, she has been working with engineers to solve the issue of sharing data with third parties, with no way of knowing who shared the data. The only time a British person is entirely in control of their personal data, suggested Escalante, is when their parents are given a red book shortly after birth.