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participation, leading to a less representative sample and thus compromised
results such as less accurate prevalence estimates. The ultimate concern appears
to be that this would have untoward effects on public health. Active
informed consent in research, however, may likewise sometimes lead to less
representative samples, and thus compromised research results, and this
can also have untoward effects on public health. Why can we live with such
compromised results in research but not in surveillance?
It should be noted that, in some kinds of research, such as epidemiological
research, the usual requirement of informed consent is waived when risks to
subjects are minimal and/or when it would be infeasible to conduct the study
if (active) informed consent were required. In the case of childhood obesity
surveillance, it would be ideal to get active informed consent from parents if
it would be feasible to do so without overly compromising results (and thus
public health benefits). This approach would both respect autonomy (in this
case, of parents) and achieve the public health benefits of the surveillance.
On the other hand, if there is good reason to believe that it would not be
feasible to seek active informed consent and/or that this would lead to substantially
compromised results, with a resultant negative impact on public
health, and if the stigmatization risks discussed above truly are minor, then
perhaps active informed consent is not necessary. The requirement of “opt
out” consent would, in any case, at least allow parents who object to the surveillance
study to refuse their children’s participation, thus substantially, if
imperfectly, protecting the autonomy of parents. In light of the inclusion of
this “opt out” consent requirement, the proposed obesity surveillance is not
completely at odds with informed consent.
Second, consider standards of care. If the obesity study in question were
considered research, it would presumably be required that children who test
positive for obesity and/or for risk factors for obesity would receive some
kind of intervention, just as clinical research subjects diagnosed with disease
(or risk factors) during clinical experimentation would be treated or receive
guidance/counseling. In the proposed surveillance study, on the other hand,
there will be no follow up; parents will not even be notified if their children’s
BMIs are problematic. Dilworth et al. say that doing so would “arguably, be
unethical.” Yet, assuming that it would be feasible for the investigators to at
least notify parents in cases where children’s BMIs are at levels considered to
be dangerous (and in need of intervention) according to standard diagnostic
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