One of the most exciting moments in life is to witness the birth of a new child. All hell could be breaking loose outside the delivery room, yet all your attention in those moments is focused on the miracle of a new baby being born. Yet in those exhilarating moments, a small event takes place in hospitals across the country that escapes the attention of most every parent, yet is becoming a matter of increasing concern for parents.
Laws in all 50 states require hospitals to collect a sample of every newborn baby’s blood (from a small pin prick to the baby’s foot). The primary purpose is to test for PKU (phenylketonuria, an inherited disease that can result in brain and nerve damage) and other diseases (California, for example, tests for some 76 different conditions).
Were the test itself the end of the matter, few questions would be raised. However, parents and others in a number of states are beginning to question what happens to those millions of infant dried-blood samples — each of which contains the entire genetic history of the infant, as well as DNA information on his or her parents and ancestors — that are collected each year. Who owns those samples? For what purpose(s) can the information be used; and by who? What agencies and commercial entities can access the information? Is parental consent required? Why should the information be retained at all?
In fact, lawsuits in at least two states — Minnesota and Texas — have been filed to test the limits of such newborn DNA data basing. The conditions under which such DNA samples are collected, retained and used likely will lead to more such lawsuits as parents learn of these factors.
Some states (California and North Carolina, among others) retain the DNA samples collected from newborns indefinitely, and other states keep them for up to 23 years. And while many states technically allow parents to refuse to have their newborn’s blood sample genetically tested, such “opt out” procedures rarely are made known to parents.
The stakes in this data war are high, as researchers and government agencies are realizing the value of such a databank of DNA and other genetic information. The Centers for Disease Control and Prevention has at least since 2002 been advocating for a national databank, calling such “leftover dried blood spot specimens” a “valuable . . . source for public health surveillance and . . . population-based data on prevalence of genetic variations.” The National Institutes of Health is using $13.5 million in taxpayer dollars to create a national blood sample repository.
These efforts are being aided by federal legislation signed into law by President George W. Bush last year that allows the federal government to screen the DNA of all newborns in the country. The purported justification for this far-reaching, privacy invasive law was the need to have a “national contingency plan” to meet “public health emergencies.”
State governments are moving quickly also to develop regimens for retaining and accessing what Sharon Terry of the Genetic Alliance calls a “national treasure” of data. Michigan, for example, reportedly has set up state-run freezer facilities at a “neonatal biobank” in Detroit.
Researchers and other advocates of DNA data basing are aggressively protecting their turf. The American College of Medical Genetics, for example, recently issued a “position statement” extolling the benefits of dried-blood specimen databases, and dismissing opponents’ concerns as “unsubstantiated and highly exaggerated.” Even the March of Dimes has joined the bandwagon — vigorously opposing requirements for parental consent (now required only in two states plus the District of Columbia).
With federal law, taxpayer dollars, and otherwise respected agencies like the March of Dimes lined up against them, parents and privacy-advocates trying to stem the tide of infant DNA data basing have their work cut out for them. Let’s hope they are up to the challenge.