U.S. reconsiders storage of newborn blood tests

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In the first 48 hours after birth, nearly all newborns born in the United States have their heels pricked so that their blood may be examined for hundreds of potentially fatal genetic and metabolic issues. 

States have been testing newborns’ blood since the 1960s for diseases that, if undetected and mistreated, can result in life-threatening physical or mental disability or death. 

According to data released by the federal Centers for Disease Control and Prevention, newborn screening programs estimate that 13,000 babies each year are diagnosed with serious disorders. 

Since the heel prick test is regarded as such a crucial public health measure, it is frequently mandated by states and parents are not requested for consent. 

​​But laboratory tests for newborn screening usually do not use all of the half-dozen drops of blood collected on filter paper cards. 

States keep the residual « dried blood spots » in storage, frequently without the parents’ knowledge or permission. The decades-long preservation and usage of this material has given rise to privacy issues in recent years. 

In some areas, bloodstains may be disclosed to law authorities who are conducting a criminal investigation or used in research projects, sometimes by third parties for a charge. 

Parents who wish to make these decisions on their own and who want to protect their children’s medical and genetic information have filed lawsuits as a result of allowing these or other uses without the informed permission of families who understand and agree to the use.

This story demonstrates how privacy issues can occur in almost any area of life (such as the care of a newborn) and how important the guiding principles of data privacy legislation are, even though the medical industry is governed by more specific laws than general data privacy laws like CPRA and GDPR.

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