PoPulationand Public HealtH etHics

It would be ideal to
get active informed
consent from parents
if it would be feasible
to do so without overly
compromising results.
research
stigmatization harms that result from the surveillance. To
help ensure this, monitoring of stigmatization resulting
from the surveillance could be combined with the surveillance
activity. In what follows, I assume that the expected
benefits of the surveillance activity will outweigh expected
harms (though this does warrant further empirical study)
and, therefore, that conducting such surveillance is, inprinciple,
justifiable. This then raises questions about the
conditions under which surveillance should occur.
Research vs. surveillance
If the study described by Dilworth et al. were considered ordinary medical
research, then active informed consent of children’s parents would arguably
be required in light of research ethics “informed consent” requirements, and
action would presumably be taken in cases where children are found to have
BMIs that are problematic in light of research ethics “standards of care” requirements.
2 In the surveillance program described, however, consent would
be passive (i.e., “opt-out”) and parents will not be notified in cases where children
are found to be “at risk.”
This raises the following difficult questions: (1) What is the distinction between
research and surveillance? and (2) What, if any, are morally relevant differences
between research and surveillance such that the ethical requirements
regarding the latter should be weaker than those regarding the former? We
would need to answer both of these questions before concluding that the study
under consideration is not subject to standard research ethics requirements.
According to the us Centers for Disease Control and Prevention (CDC), the
distinguishing feature of research is the “purpose . . . to generate or contribute
to generalizable knowledge”; the distinguishing feature of (relevant) non-research
such as surveillance is the “purpose . . . to prevent or control disease or
injury and improve health”. 3 There are numerous reasons why this technical
distinction might be considered problematic. First, purposes — i.e., intentions
— are notoriously difficult to verify, and so a distinction based on purposes
seems a problematic way of determining whether a study is research or not.
Second, it would appear that, by this definition, much prototypical research
(i.e., clinical experimentation) might be considered non-research because it
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