States have created biobanks funded by genetic material left over from our screening tests, and, even more surprising, our specimens may be used for purposes we do not fully understand or for which we have not granted informed consent.
In most states, blood spots are transferred to long-term-storage banks run by state departments of health, where they are retained for at least a couple of years. But in 12 states, samples are kept in a biobank for 21 years or longer. That’s because, increasingly, health departments are using—and sharing—the genetic information for research and analysis. This practice has accelerated since 2009, when the National Institutes of Health (NIH) awarded a contract to the American College of Medical Genetics and Genomics (ACMG) to establish a Newborn Screening Translational Research Network and develop a national repository of newborn DNA "stored by state newborn screening programs and other resources." Meanwhile California, Iowa, Michigan and New York already participate in a virtual repository, which allows researchers to access data—and in some cases the stored infant blood spots themselves—for their investigations.
In the 1960s when the program was first developed, “the feeling was, the advantages for newborn screening were so compelling, it was appropriate or acceptable to have states simply mandate screening,”