Mandatory Infant Medical Tests: Health Care, or Government Overreach?

New parents face a dizzying flurry of activity in a hospital after the birth of a child, and even those who feel prepared and educated can be overwhelmed. In the midst of the inevitable physical and emotional strain, new parents in the United States are confronted with mounds of legal paperwork they may sign without reading or understanding. 

Some of these documents concern infant medical screening. All states have laws mandating such testing for newborns, but the degree of intrusiveness and the government’s use of results vary widely by state. Parents need to familiarize themselves with their local laws in order to guard their children’s privacy in the ways they, as rightful guardians, deem appropriate. 

The Bare Minimum

All states require testing newborns for at least 29 health conditions. Although parents can seek exemptions in most states, they are not always granted. Given that the overall compliance rate in most states is more than 99.9%, parents are clearly either comfortable with the tests or uncomfortable (or unable) to avoid them. 

To the extent parents give willing and informed consent, the testing can be invaluable. About 12,000 infants born each year are diagnosed with a disease for which screening is available, and some of these potentially dangerous conditions are easily treated and controlled. 

However, it would be ludicrous to claim parents routinely give true consent. Unless they are medical professionals themselves, parents can hardly be expected to familiarize themselves with 29 or more tests, possible outcomes, diagnoses, prognoses, and state utilization of results. They are very unlikely to know the privacy laws (or lack thereof) that control who can see the results, and for how long samples and charts are stored.

The Potential Maximum

Probably the best example of extreme government overreach in newborn screening is New Jersey, and parents in all states would do well to use it as a cautionary tale. Not only are the laws themselves shocking, authorities there are also notoriously hesitant to give parents information about what meager legal rights they do have. Parents are told the testing is required if they are told anything at all. 

The state of New Jersey keeps blood samples taken at birth for 23 years, and it gives few restrictions on how those samples can be used. This means adults who are trying to get loans, insurance, education, employment, etc., may be facing schools and other institutions that have access to sensitive information that is absolutely none of their business, but potentially prejudicial. Even if their parents manage to avoid the testing, this very fact could be seen as a sign of a “problematic” culture of non-compliance in the family.  

Not only are the secrecy and storage alarming, the nature of both current and proposed future tests themselves should concern anyone. New Jersey officials are hoping to add genomic sequencing to the newborn test list, possibly as a required component. If they are successful, all babies born in New Jersey will have their DNA collected and stored. The possible ramifications of this are impossible to overstate. It will, quite simply, allow for lifelong surveillance of everyone born in the state. 

And although New Jersey is a particularly egregious example, other states are giving it competition for the most frightening privacy invasion. Michigan, for example, recently came under fire for both selling leftover baby test blood to health researchers and giving it to police to aid in crime investigations. Texas has been criticized for giving the samples to the Pentagon for its DNA database. 

The Dystopian Future

Parents who are either unaware testing is occurring or are forced into it would surely be even more horrified to know the blood is being used this way. And, once harvested, it can be used in the future with technology that has not even been imagined yet.

Like many scientific and medical advancements, newborn blood tests have immense potential for both help and harm. But if parents don’t really have a choice in the matter, any benefit to children is surely negated by the government’s abuse.