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? (more…)