Privacy and Health Research. Some Ancillary Privacy-Rights Claims


Privacy has variously been cited as a rationale to cover a great many situations.23 Here we can just note a few potentially relevant for health research. Among data-subject rights claimed have been:

  • Right to know information about oneself
  • Right to know what it is that others know (as is granted in most data-protection and fair-use laws)
  • Right not to know (such as medical diagnoses, prognoses, genetics)
  • Right to prevent others, even family members or partners, from knowing (which is very controversial in public-health ethics regarding infectious diseases and burdensome illnesses)
  • Right to continuation of informational privacy even after death (such as regarding the cause of death itself)
  • Right to object to use of data derived from oneself, even if it is anonymized
  • Right to insist that data on oneself not be irreversibly anonymized (so as, for instance, to be able to learn of the findings).

Each such claim has to be judged in its context.

(23) David H. Flaherty discusses these listed and more, in Protecting Privacy in Surveillance Societies (University of North Carolina Press, Chapel Hill, 1989).