Whose Paternalism Counts?

Margaret Curnutte | 9 September 2011 | Respond

A baby's genetic code is a site of bioconstitutionalism

Within the first few days of life, most newborns in the United States are screened for about forty diseases. Health care providers prick the heels of newborns and collect blood spots on cards for genetic and protein analyses. Newborn screening programs, which began in the 1960s, have allowed researchers to identify, for example, metabolic conditions that clinicians can be treat and cure with early detection. The newborn blood samples, however, can later be anonymized and used for research purposes. In effect, state based screening programs provide a platform for state run biobanks.

In a recent Nature article, “A spot of trouble,” Mary Carmichael covered the current debate around such screening programs. Opponents have raised concerns as to whether parental consent for research on infant blood spots is handled properly. How informed are parents about the state’s ability to biobank their infants’ blood samples? Defenders of such biobanking easily point to its benefits. Researchers have used the samples to develop tests for debilitating disorders, to ensure the accuracy of existing tests, and, in broad terms, to further medical research. The dispute boils down to consent and privacy concerns versus public health benefits. Some people have recommended an opt-in system for research, or privatized newborn screening programs as alternatives to what we currently do.

The debate over newborn blood-spot screening and biobanking illustrates how the state defines its responsibilities to its citizens alongside emerging technologies. Reproduction and childrearing traditionally have been domains in which the state does not intrude, except in cases when the health or well-being of a child is at risk. Public health matters have been one channel through which the state intervenes on the sacred private parental domain. The current dispute over the use of newborn blood spots points to a redistribution of responsibilities around newborns. Who speaks on behalf of the newborn? Parents or the state? Who’s paternalism counts?

The issue becomes further muddled when considering that parents have an interest in their newborn, whereas the state justifies the use of samples for research purposes with an emphasis on the good for the aggregate of newborns. How should parents be included in public health aims that capitalize on the valuable biological resources of their newborns? The questions emerging from this story point to a bioconstitutional moment. That is, the state is defining the rights and entitlements of its citizens alongside a biotechnology. The collision of biological screening technologies with public health benefits and imagined future health goods is forcing us to rethink the role of parents in relation to the state.

Maggie Curnutte is a Postdoctoral Fellow with the Program on Science, Technology, and Society at Harvard University’s Kennedy School of Government.  She is interested in the social, political, and ethical implications of biomedical gene technologies.

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