Amy O’Donnell from RDF partner organisation Oxfam led a session on the Ethical Treatment of Data in New Digital Landscapes at the Oxford Internet Institute in February. Terence Eden blogged about the event here, raising questions including what could happen if a person decides to withdraw their data from a research project:
[Withdrawal is] a sensible policy which will hopefully reassure participants who may feel uncomfortable about their data being misused.
But withdrawal has its downsides. A user with a pseudo-anonymised data set may be able to correlate changes to the data with known changes to the participant lists. Convince your cousin to drop out of the research and you stand a good chance of working out which “anonymous” participant she was.
Does withdrawing from future collection also mean that past data ought to be removed? Participants may think so. That could lead to irreparable destruction of data rendering the research useless.
Does your organisation let people withdraw data that you have collected about them? Are you facing similar issues, and how do you manage them? Let us know in the comments.