Building a DNA database: the federal government has just enacted two bills related to DNA. The first would drive the collection of DNA from all infants. The second would attempt to prevent the DNA that is collected from being misused

New American, The, June 9, 2008 by Wilton D. Alston

The passage of two bills in the Senate and the House, and the recent signing of those bills into law by President Bush, provides an object lesson in the type of logic that governs the coercive state. Simply put, the actions of an intrusive government necessitate further actions by that government to attempt to undo the unintended negative consequences of the initial government actions, but pushy politicians simply don't care. Or so it seems.

The bills in question are known as the Newborn Screening Saves Lives Act of 2007 and the Genetic Information Nondiscrimination Act (GINA) of 2008. The Newborn Screening Act passed via an unrecorded voice vote in both houses. GINA had been under discussion in one form or another since about 1995, and passed by a vote of 420 to 3 in the House and 95 to 0 in the Senate.

The official summary of the Newborn Screening Act states that it is "a bill to amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated follow-up care once newborn screening has been conducted." This is legislative codespeak for using grant money to coerce healthcare providers to "provide outreach," i.e., collect and transfer genetic data to the state.

The official summary of GINA states that it is "a bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment," meaning it uses the power of the government to prevent insurance companies and employers from actually acting upon the information the state collected via the Newborn Screening Act.

The Newborn Screening Act essentially creates a nationwide government databank of infant DNA, and by offering millions of dollars to healthcare providers, it seeks to ever enlarge the contents of that "DNA warehouse.'" GINA supposedly prohibits providers of insurance coverage from using this nearly mandatory information for what could quite accurately be called genetic testing. However, it does not prevent the government from using that information.

The most striking irony might be how one bill effectively claims to limit the negative effects of the other. One law generates the data while a second law supposedly protects the public from its use. As usual, the state provides the worst case of several options--coerced data collection, loss of private DNA ownership, and ostensive protection from the results of both. Why not simply allow for personal choice and respect appropriate personal data ownership in all cases?

What's the Worst That Could Happen?

The negative consequences from a state-mandated DNA warehouse, including involuntary genetic research on entire populations, have already been well identified and analyzed by people like Twila Brase, from the Citizens' Council on Health Care (CCHC). In Minnesota, where CCHC has its national office, the DNA of 780,000 children resides in the state's DNA Warehouse, and 42,210 of these children have been subjects of research without parental consent. Brase claims DNA storage and use violate privacy, parent, patient, and DNA property rights. Similarly, the federal Newborn Screening Act attempts to usurp the property rights of each individual by allowing the state to collect his DNA at birth. Only two states require consent, and only a few states, like Minnesota, have an "opt-out" system which Brase says actually assures high compliance rates because most parents going through post-partum exhaustion and excitement do not realize it's the state, not the hospital, coming in to take their baby's blood. Afterward the State owns that DNA in perpetuity. Thus, the federal legislation, the premise of which is little else but theft, is tragically flawed.

The premise of the Genetic Information Nondiscrimination Act--that discrimination is wrong generally, and therefore discrimination based upon genetic information is also wrong specifically--is also flawed. Claiming to protect the public from discrimination is a classic Red Herring. Frankly, it is only a coercive state that could create a situation whereby people would need protection from this information.

According to a piece appearing in the New York Times for May 2: "Democrats and Republicans alike cited anecdotes and polls illustrating that people feel they should not be penalized because they happened to be born at higher risk for a given disease." The polls tell us that many Americans do not want to be automatically penalized for any aberrant genetics--understandable.

However, when Congress succumbs to codifying this desire, it illustrates its misunderstanding of the economic basis of insurance: to analyze each person's risk and insure him according to that risk. One cannot remove this basis via legislation. If a person is at risk for a malady that will result in higher-than-expected payouts by his insurance, the company should be able to charge him more for his premium. However, that is a secondary point.

Fundamentally, when Congress creates incentives for the collection of citizen DNA, it creates a situation where government--an organization renowned for not being able to protect information and for having a suspect record of honoring private property rights--generates an ever-increasing mound of stolen property. This amassed record of information on private citizens opens the door for a troubling condition fundamental to any large bureaucracy. That which is supposedly owned by everyone--the basis of state ownership--will generally be adequately protected by no one. Ironically, it is only the state that can create such a situation: the collection of data that should be given by informed consent but is not, combined with an ever-growing stockpile of data that is ostensibly protected but is not, and cannot be.