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Building a DNA database

on Sunday, 31 August 2008. Posted in United States

Children’s DNA is being taken right after birthChildren’s DNA is being taken right after birth.

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.

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 for 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 Non-discrimination Act (GINA) of 2008. The Newborn Screening Act passed via an un-recorded 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 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 from 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 worse 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 its’ 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.

(Editor’s note: Insurance companies today take advantage of their clients, many times forcing them to forego medical attention because of premiums that are too high, or because the insurance does not cover the services needed. The healthcare field have become corrupt because they are the owned by large corporations who are controlled.)

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.

Whose choice is it, anyway?

If there is advantage to be had by genetic testing, each individual is best suited to make his own risk/reward decision. If those advantages are legitimate, there is no need to surreptitiously drive the collection of DNA via legislative sleight-of-hand such as grants to providers, which are primarily state health departments. For every patient who potentially faces a possible higher insurance premium, there is a corresponding patient—or more likely, a bevy of patients, whose life would be better because he is informed. The owner of the DNA is uniquely suited to make this decision, if he is informed and allowed to do so.

The fundamental question is: "Does it make sense for the state to require the collection of genetic information (or incentivize its collection), take perpetual ownership of that information, and then claim to protect the citizenry from its misuse?" In all cases the answer is the same. No.

If the information is important enough to collect in the first place, shouldn’t each individual decide this question for his own DNA? If the answer is yes, why should the government collect it? And why should the government do so in such a blatantly sneaky manner, at a time when few if any parents will be worrying about protecting the property of their just-born child? Why store this data in an ever-expanding, state-owned stockpile? Isn’t it self-evident that an individual’s DNA belongs to him, not the state? If that individual—or his parent acting on his behalf—chooses to submit DNA for testing to collection or storage or research, it should be between the doctor and the patient, not the hospital and the government. If that submission subsequently uncovers some negative consequence, that should be left to the market to regulate, ultimately still between the individual and those who provide him products and services.

In the best case scenario, the consumer is free to decide whether or not to submit to a DNA test or to provide the text results to an insurance company. An insurance company could make DNA testing a condition of insurance—but consumers would be free to shop around for other insurance. Also, consumers could seek redress in the courts if the DNA information, which should be treated like other medical records a health-care provider may possess, is released without permission. In the worst-case scenario, the state drives the collection of the information on the one hand, does who-knows-what with it, and requires providers of insurance to act as if that information does not exist on the other hand, leaving more people with no course to redress any unauthorized releases of their DNA. We have theft of the most basic ownership—that of self—and an ever-swelling pile of information in the hands of a government chronically unable, and quite possibly unwilling, to protect it. Ironically, even if we are dissatisfied with the outcome of that collection, we are still required to fund the organization which caused the problem in the first place.

Ultimately, a free society is based upon equal measure of being able to maintain ownership of that which is yours, choose an action to take with that item, and reap the personal rewards (or endure the penalties) of that action. These two bills usurp most portions of that scenario. Few are likely to benefit as a result—least of all those whom the state claims to protect—and many are likely to be harmed by the analysis, profiling, and targeting of individuals that may soon result from government ownership of citizen DNA. The ominous question remains: why let government collect data in the first place?

by Wilton D. Alston

(Used with permission, this article was published in The New American Magazine, June 9, 2008).