Collecting and storing every newborn’s blood violates Genetic Privacy Act
November 18, 2011
In a long running case, a Supreme Court has ruled to limit the use of blood samples collected from newborns by the government.
The case has exposed the fact that there is an ongoing semi-covert movement by state and federal governments to claim ownership of every newborn baby’s DNA for the purpose of genetic research without the consent of individual citizens.
The Minnesota Court ruled Wednesday that the Minnesota Department of Health is violating the law in storing, using and disseminating newborn screening test results and newborn DNA.
Overruling a lower court’s decision, the state Supreme Court found that the samples are “Genetic Information” under the State Genetic Privacy Act, and held that “unless otherwise provided, the Department must have written informed consent to collect, use, store, or disseminate [the blood samples].”
In 2003, The Citizens’ Council for Health Freedom (CCHF), formerly known as The Citizens’ Council on Health Care (CCHC), discovered that The Minnesota Department of Health had been indefinitely storing the blood of newborns since the mid 1980s, and using the samples for purposes beyond the State’s newborn screening program since 1997.
The state treated the activity as an “opt out” program, whereby if the parents of the newborn infant do not specifically opt out of the process, the state presumes its has “informed consent” and that the parents have opted in.
Consequently, the DNA of nearly a million children is considered government property under Minnesota law.
Without the knowledge or consent of the person or their parents, the government has been selling the DNA for genetic research purposes.
In 2008, state Health Department officials began seeking exemption for the so called “DNA Warehouse” from Minnesota privacy law.
Essentially this would mean that eventually every person’s DNA would be collected at birth, warehoused by the state in what is known as a “genomic biobank”, and sold or given away to private or governmental genetic researchers, who may manipulate, alter or splice the DNA in any way they see fit. Hundreds of samples have already been used in government comissioned studies.
Such information would represent a goldmine to employers, insurance companies, medical institutions, and big pharma.
Under such conditions we are faced with the prospect of a society that is literally the mirror image of the nightmarish vision outlined by Aldous Huxley in his 1932 novel Brave New World, where individuals are categorized in a social hierarchy according to their genetic traits.
In a statement, Justice Helen M. Meyer, voicing the majority opinion in this week’s ruling, writes:
“The Genetic Privacy Act … restricts the collection, use, storage, and dissemination of blood samples collected pursuant to the newborn screening statutes…
“The newborn screening statutes provide an express exception to the Genetic Privacy Act only to the extent that the Department is authorized to administer newborn screening by testing the samples for heritable and congenital disorders, recording and reporting those test results, maintaining a registry of positive cases for the purpose of follow-up services, and storing those test results as required by federal law.”
The case was brought by 9-families who sued the Minnesota Department of Health for violation of the state genetic privacy law.
The following video shows the oral argument brought before the court back in March and breaks down the issue in much more detail:
In a press release concerning the court ruling, Twila Brase, president of CCHF writes:
“We are cheered by this good news, says. “When our organization discovered the state health department’s Baby DNA warehouse in 2003 and the use of newborn DNA for genetic research without parent consent, we determined to do all that we could to stop this practice. No state law expressly permits these activities.”
“We are pleased that these nine families were willing to sue the State of Minnesota,” adds Brase. “Their action and this decision now secures the genetic privacy rights and informed written consent rights of all Minnesota parents and newborn citizens.”
Ms. Brase has been warning of the ongoing move for a a number of years. In January 2007 she issued a written testimony to the Minnesota legislature on the unethical and hidden uses of harvested DNA by the state.
Watch Twila Brase explain the possible consequences of the pending DNA profiling legislation:
Though the Minnesota case has received recent public attention, such DNA harvesting is not restricted to that state and is being undertaken nationwide.
The National Conference of State Legislatures lists for all 50 states, as well as the District of Columbia, the various statutes or regulatory provisions under which newborns’ DNA is being collected.
DNA of newborns has been harvested, tested, stored and experimented with by all 50 states. In addition, all 50 states are now routinely providing these results to the Department of Homeland Security.
In April 2008, President Bush signed into law a bill which formerly announced the process that the federal government has been engaged in for years, screening the DNA of all newborn babies in the U.S. within six months of birth.
Described as a “national contingency plan” the justification for the law S. 1858, known as The Newborn Screening Saves Lives Act of 2007, is that it represents preparation for any sort of “public health emergency.”
The bill states that the federal government should “continue to carry out, coordinate, and expand research in newborn screening” and “maintain a central clearinghouse of current information on newborn screening… ensuring that the clearinghouse is available on the internet and is updated at least quarterly”.
Sections of the bill also make it clear that DNA may be used in genetic experiments and tests, both by the government and by researchers chosen to handle the DNA samples and the information that goes with them.
Read the full bill here.
Many have described the law as the first step towards the establishment of a national DNA database, like the one in the UK.
In 2006 and 2007, then Senator Obama filed legislation that would create a national DNA database. The same bill was filed by Sen. Patrick Kennedy in 2008. The bills required parental consent, but all three died in the Senate.
In certain states, authorities are required to destroy a child’s DNA sample if a parent demands they do so. Ludicrously, parents wishing to do this must fill in a form like this one from Texas.
In other states, parents have to put their request in writing, however, there is no legal requirement for states to destroy the samples.
The subject made national headlines last year as CNN’s Senior Medical Correspondent probed the issue:
The practice of taking DNA from all newborns is not limited to the U.S.
In the UK, a similar DNA harvesting program was rejected in 2005 by The Human Genetics Commission, who cited cost and ethical problems in a report to government ministers.
However, DNA profiling of all newborn babies has since been called for by lawmakers and senior police officers.
In December 2009, a Dublin hospital was revealed to have built a secret database containing the DNA of almost every person born in the country since 1984 without their knowledge.
The retention of newborn screening cards has also caused controversy in Australia and New Zealand where the DNA has been used by police to help to solve crimes. A sample in New Zealand was used to identify the father of a dead child against the wishes of the mother.
There is no doubt that the practice is in operation all over the developed world.
The Minnesota Supreme Court ruling is a small victory on this issue. However, unless this practice is further exposed, publicized, and taken to courts across the country, and indeed the world, we could find ourselves sleepwalking towards the basis for a new eugenics movement, the practice of “perfecting” the human race through genetic manipulation, previously endorsed by Planned Parenthood founder Margaret Sanger, and toyed with by the likes of Adolf Hitler.
Steve Watson is the London based writer and editor for Alex Jones’ Infowars.net, and Prisonplanet.com. He has a Masters Degree in International Relations from the School of Politics at The University of Nottingham in England.
This article was posted: Friday, November 18, 2011 at 10:15 am