Privacy and Health Research. 4. Identifiability, Consent, and Protections


One of the most reassuring things a research organization can say with respect to the privacy of the people whose health data it is studying, is: "We don't know the personal identity of our data- subjects; and we really don't want to know." 60

This should not necessarily mean that no-one can trace back to the data-subject if scientific reasons require it. But such tracing-back should itself be at least a small project, the difficulty of which should be scaled to suit the situation.

(60) As many researchers said to the author in interviews during this study.