The Washington Post has a story on the privacy of newborn children’s DNA, noting that sometimes the medical data is collected and retained without parents’ knowledge or consent. The data collection is done when children are born in hospitals. “Hospitals prick the heels of more than 4 million babies born each year in the United States to collect a few drops of blood under state programs requiring that all newborns be screened for dozens of genetic disorders.”
A group of parents [is] challenging Minnesota’s practice of storing babies’ blood samples and allowing researchers to study them without their permission. The confrontation, and a similar one in Texas, has focused attention on the practice at a time when there is increasing interest in using millions of these collected “blood spots” to study diseases.
Michigan, for example, is moving millions of samples from a state warehouse in Lansing to freezers in a new “neonatal biobank” in Detroit in the hopes of helping make the economically downtrodden city a center for biomedical research. The National Institutes of Health, meanwhile, is funding a $13.5 million, five-year project aimed at creating a “virtual repository” of blood samples from around the country.
The storage and use of the blood is raising many questions, including whether states should be required to get parents’ consent before keeping the samples long-term or making them available to scientists, and whether parents should be consulted about the types of studies for which they are used. The concern has prompted a federal advisory panel to begin reviewing such issues. […]
Although parents are usually informed about the tests and often can opt out if they object for religious and other reasons, many give it little thought in the rush and exhaustion of a birth. And parents are generally not asked for permission to store the samples or use them for research. […]
But the states can still link each sample to an individual child — and that worries some parents, patient groups, bioethicists and privacy advocates, especially with advances in genetics and electronic data banks linking medical information from different sources.