Why Are the States Requiring Hospitals to Take DNA Samples of Newborn Babies?

This here article by Bob Barr regarding hospitals taking DNA samples of babies after birth seems pretty freaky. Like most people, I understand the basic concept of what DNA is. But what I don’t understand is why parents must be forced to give up a personal piece of their own child.

Brave New World of Infant DNA Data-Basing

6:00 am July 13, 2009, by Bob Barr

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?

Yeah Bob, that is my questioning too.

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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.

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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.

This is like something out of 1984.  I don’t even think George Orwell could have predicted anything this creeepy.  Please, PLEASE read the full article here.