In for blood

Civil rights groups in Minnesota and Texas are fighting their state governments in some of the first legal battles over newborn blood screening.

Every newborn, at nearly any hospital worldwide, is put through a standard screening procedure within a few hours of birth. Doctors prick the infant’s heel, and a few drops of blood are screened for rare diseases, anonymized, stored and, sometimes, given to scientific researchers. These samples have proven invaluable to scientists who are studying the basis of complex psychiatric disorders, including autism.

But here's where this gets ethically and legally sticky: newborn blood screening, at least in most U.S. states, happens automatically, often without the parents knowing about it, let alone consenting to it. According to an article in Science earlier this month, the lawsuits claim that taking and storing blood without the parents’ explicit consent violates privacy rights.

Call me paranoid, but I wholeheartedly agree.

Citizens of other countries, most notably of Sweden and Denmark, think nothing of handing over medical data to public health registries. In addition to storing blood spots, the Danish government tracks, among other things, the employment information, marital status and medical problems of every citizen.

"Anything like getting a prescription, getting any government services, bank and salary information, all of that can be linked," Danish scientist Poul Thorsen told me in an interview last fall.

Those databases have led to some fascinating findings about autism and other rare psychiatric diseases. With the 2-million-plus samples in the Danish newborn biobank, scientists have been able to verify autism's prevalence, measure hormone levels during fetal development, and identify possible environmental causes of schizophrenia.

In Denmark, unlike in America, the databases are common knowledge, and any citizen may opt out of the program (though few do). In the U.S., responding to the recent legal skirmishes, the Department of Health and Human Services has asked a federal committee to look into the ethics of storing blood without parental consent; the committee plans to make recommendations later this year.

To my mind, this is a no-brainer. American researchers aren't allowed to operate on, give drugs to, or scan the brain of someone without informed consent. Why then should they be able to take babies’ blood without it?