By Allison M. Whelan. Full text here.
Ninety-eight percent of infants born in the United States undergo blood tests to screen for a variety of genetic conditions as part of mandatory state newborn screening programs. These “newborn blood spots” (NBS) are frequently stored by state health departments after the initial tests are complete. Recent lawsuits in Texas and Minnesota have exposed states’ use of residual NBS for research unrelated to the initial screenings without parental consent. State public health officials and researchers claim that residual NBS are necessary and vital resources for research to advance public health and well-being and that requiring parental consent would hinder important research. Parents and patient advocacy groups, however, are angry that consent is not obtained and are concerned that the samples could be linked back to their child and used for discriminatory purposes, such as in employment or insurance-coverage decisions.
This Note argues that the state’s interest in promoting public health does not justify the non-consensual use of residual NBS. It proposes a model that states can, and should, implement to improve transparency and allow parents to make informed decisions. The proposal is crafted in a way that respects parental rights and children’s rights, while still allowing the promotion of public health through medical research that seeks to detect new diseases, develop new treatments, and eradicate disease.