biomedical ethics is grounded on autonomy,
and of consequence elevates a model of individual consent.
It is the standard
for the clinical setting, where a competent adult is presumed
to direct the course of his or her care. It is the standard
for research, with informed consent to experimental participation
expected for all but situations involving minimal risk to
the subject. Public health, with an orientation toward the
welfare of groups, is an exception: it explicitly rejects
the individualized model.
affords a broader range of "social consent" models.
In democratic systems, a majority may consent for all. Depending
on the issue, assent by a plurality (less than half) may be
sufficient; or a "super-majority" (more than half)
may be required, as for constitutional questions in the US
of history may explain much of how issues are categorized
and decided, the democratic principle is that the more important,
onerous or burdensome a choice is for individuals, the more
compelling it is to seek individual consent if it is practical
to do so.
Since data protection
issues are relatively new ones; there is little social-historical
guidance on how to categorize them to decide on an appropriate
model of consent. And there is little empirical data to suggest
the risks and benefits actually visited upon individuals,
to know the degree of "burden" implied by such choices.
of socially-valued ends set against individual risk forms
one of the core problems of information fairness, particularly
in health care, and particularly in the United States.
value privacy for its
own sake, being loath to have intimate details of their lives
available to any and all comers. This is particularly true
of the intimate details contained in a health record. More
critically, in a society where personal information disclosures
may have adverse consequences, such as in loss of insurance
or employment, privacy has a clear instrumental value.
Beyond the narrow
confines of clinical care, where a electronic record-keeping
systems may improve the quality of care an individual patient
receives, the benefits of health information technologies
are society-wide, indeed inter-generational. Data collection
aims to improve the efficiency (via outcomes research) of
the system as a whole. Public health surveillance aims to
improve the health of all.