Junkfood Science: Ingsoc

August 29, 2007


The latest issue of Health Freedom Watch, published by the Institute for Health Freedom, has a “this couldn’t happen in America” story.

The IHF reported that “the Minnesota Department of Health has been collecting and storing blood and DNA material on newborn babies without their parents’ consent.” The Citizens’ Council on Health Care (CCHC), a health-policy organization based in Minnesota, discovered that the health department has been illegally collecting DNA material for ten years and has DNA on at least 670,000 babies which it is giving away for genetic research.

Twila Brase, president of CCHC, said this violates the state’s newborn screening and genetic privacy laws. The CCHC has been working to get the health department to comply with state law and, so far, the Governor has failed to act.

Just a few weeks ago the news from the UK reported a similar story. Government law enforcement agencies in England and Wales want expanded powers to collect DNA material on citizens, creating a huge genetic databank. As the Daily Mail reported:

Speeding drivers face DNA swabs under new Big Brother powers

Drivers stopped for speeding - or even for failing to wear a seatbelt - could soon be placed on the 'Big Brother' DNA database for life. The most trivial offences, [sic] such as dropping litter, would also lead to samples being taken under sweeping new powers which police are demanding. The samples would stay on the database, alongside those of murderers and rapists, even if the people involved were later cleared of any wrongdoing....

[Police - backed by the Crown Prosecution Service] argue that, just because a person initially commits a low-level misdemeanour such as dog fouling, it does not mean they will not progress to the gravest crimes. A chance to take their DNA - making any future crime far easier to solve - would be missed without new powers. Police also want to take samples - usually a mouth swab - at the scene of the "crime." ...There are already four million samples on the database - including those of a million suspects who turned out to be innocent...

The Times revealed more facts about those 4 million DNA samples already held by the government, reporting:

There are almost four million samples on the database, including more than 100 of children aged under 10, even though they have not attained the age of criminal responsibility. A further 883,888 records of children aged between 10 and 17, and 46 records of people aged over 90, are held on the database, which cost more than £300 million. Baroness Scotland of Asthal, QC, the Attorney-General, admitted when she was a Home Office minister that three quarters of the young black male population would soon be on the DNA database.

The Human Genetics Commission, the Government’s independent DNA watchdog, yesterday announced the first public inquiry into the database. Baroness Kennedy of The Shaws, QC, chairwoman of the commission, said: “The police in England and Wales have powers, unrivalled internationally, to take a DNA sample from any arrested individual, without their consent. We want to hear the public’s views on whether storing the DNA profiles of victims and suspects who are later not charged or acquitted is justified by the need to fight crime.”

Lady Kennedy added: “The database has a preponderance of young men, with a third of black males currently on it. And anyone on it is there for life.

The public comments and debate are well worth reading. History is about to repeat itself, some warn. Benjamin Franklin’s famous quote was cited several times: “Any society that would give up a little liberty to gain a little security will deserve neither and lose both.” And some American commentators were unaware that it’s the new world order, not an issue exclusive to the UK.

While national security or science for the common good might sound like noble reasons for governments to gather genetic material of its citizens, that’s not what this is really about. And the potential for abuse and financial and political gain go far beyond anything George Orwell even envisioned. [Hopefully, everyone has read the classic novel, 1984, published in 1949 where Orwell describes the world under Big Brother. This historic book is available free here.]

The Council for Responsible Genetics, based in Cambridge, Massachusetts, hosts a website called Gene Watch with a collection of thought-provoking articles on abuses of our genetic material, such as genetic discrimination. It’s already happening:

Genetic Testing, Discrimination, And Privacy

The concept of “genetic discrimination” only recently entered our vocabulary. But the problem is well documented. In as many as five hundred cases, individuals and family members have been barred from employment or lost their health and life insurance based on an apparent or perceived genetic abnormality. Many of those who have suffered discrimination are clinically healthy and exhibit none of the symptoms of a genetic disorder. Often, genetic tests deliver uncertain probabilities rather than clear-cut predictions of disease. Even in the most definitive genetic conditions, which are few in number, there remains a wide variability in the timing of onset and severity of clinical symptoms. Employers have access to medical/genetic information, which may be used to discriminate against their employees. One recent example is the discrimination faced by workers in the Burlington Northern Santa Fe Railroad Company, which the Equal Employment Commission last year revealed to be conducting genetic tests on its employees without their informed consent, as a means of counteracting workers compensation claims for job-related stress injuries.

Beneath the issue lies an endless number of personal stories. A woman diagnosed with hereditary hemochromatosis, a condition that causes excessive iron storage, but the symptoms of which are preventable through medication, loses her health insurance despite clear medical evidence that she is healthy. A middle-aged man applying for a government job is denied employment after medical and genetic tests reveal that he is an unaffected carrier ....

The current patchwork of federal laws, including the Americans with Disabilities Act and the Health Insurance Portability and Accountability Act, hardly scratch the surface of the problem.... In all cases, state and federal laws have primarily addressed the unlawful use of genetic data, sidestepping the question of whether employers and insurance companies should have access to genetic information in the first place.

The most effective way to prevent the misuse of genetic information is to keep it confidential and securely out of the reach of outsiders. The right of privacy is recognized in common law and the Fourth and Fifth Amendments of the Constitution....

As one of the public commentators at the Times insightfully noted: “They want your DNA because of all the information it reveals about you. As the human genome is decoded, government, employers, insurance salespersons, banks, and everybody else will be able to read what diseases you are genetically predisposed to and make decisions affecting you without your control. Government et. al. will have this increased power over you, but you will not have any more power over your government. In fact, it is just one more means of rendering you helpless and vulnerable to the whims of bureaucrats who have their own interests in mind, not yours. Eventually all people will be monitored and controlled from cradle to grave - the journey of which is adjustable by those with enough power.”

This is so much bigger than public health and safety.

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