Collecting and storing every newborn’s blood violates Genetic Privacy Act
By Steve Watson, Prisonplanet.com
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.By Elizabeth Cohen, CNN
February 4, 2010
When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.
While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.It's simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.
In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center.
Many parents don't realize their baby's DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government's possession.
"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."
According to the state of Minnesota's Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research.
Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.
However, he added that storage of DNA for long periods of time is a different matter.
"I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous."
DNA given to outside researchersHealth Council, Congressman Ron Paul warn new law could pave the way for a national DNA database
Steve Watson, infowars.com
May 2, 2008
President Bush last week signed into law a bill which will see the federal government begin to screen the DNA of all newborn babies in the U.S. within six months, a move critics have described as the first step towards the establishment of a national DNA database.
Described as a "national contingency plan" the justification for the new 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.
Read the full bill here.
One health care expert and prominent critic of DNA screening is Twila Brase, president of the Citizens' Council on Health Care who has written a detailed analysis (PDF) of the new law in which she warns that it represents the first program of populationwide genetic testing.
Brase states that S.1858 and H.R. 3825, the House version of the bill, will:
- Establish a national list of genetic conditions for which newborns and children are to be tested.
- Establish protocols for the linking and sharing of genetic test results nationwide.
- Build surveillance systems for tracking the health status and health outcomes of individuals diagnosed at birth with a genetic defect or trait.
- Use the newborn screening program as an opportunity for government agencies to identify, list, and study "secondary conditions" of individuals and their families.
- Subject citizens to genetic research without their knowledge or consent.
"Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered governmental property for government research," Brase writes. "The DNA taken at birth from every citizen is essentially owned by the government, and every citizen becomes a potential subject of government-sponsored genetic research."
"The public is clueless. S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research. It does not require consent and there are no requirements to fully inform parents about the warehousing of their child's DNA for the purpose of genetic research."
In a previous report we outlined the consequences of the already existing DNA warehousing operation in Minnesota, a program that the Citizens' Council on Health Care has been following closely for a number of years.
Ms. Brase explained in a statement last month that state Health Department officials are now seeking exemption for the so called "DNA Warehouse" from Minnesota privacy law. This would enable state officials to continue to take the DNA of newborn infants without consent, which would also set the precedent for nationwide policy on DNA screening.
DNA of newborns has already been harvested, tested, stored and experimented with 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 already being collected.
In addition, all 50 states are now routinely providing these results to the Department of Homeland Security.
The Newborn Screening Saves Lives Act of 2007 merely establishes this practice within the law.
Another vocal critic of bill S. 1858 is Texas Congressman Ron Paul who made the following comments before the U.S. House of Representatives:
"I cannot support legislation, no matter how much I sympathize with the legislation’s stated goals, that exceed the Constitutional limitations on federal power or in any way threatens the liberty of the American people. Since S. 1858 violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy, I must oppose it."
Paul, a medical doctor himself continued,
Millions of newborn babies have had their DNA stored by hospitals without the proper consent of their parents, it has been revealed
"S. 1858 gives the federal bureaucracy the authority to develop a model newborn screening program. Madame Speaker the federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the United States. …"
"Those of us in the medical profession should be particularly concerned about policies allowing government officials and state-favored interests to access our medical records without our consent … My review of S. 1858 indicates the drafters of the legislation made no effort to ensure these newborn screening programs do not violate the privacy rights of parents and children," Paul continued.
"In fact, by directing federal bureaucrats to create a contingency plan for newborn screening in the event of a 'public health' disaster, this bill may lead to further erosions of medical privacy. As recent history so eloquently illustrates, politicians are more than willing to take, and people are more than willing to cede, liberty during times of 'emergency," he concluded.
May 23, 2010
Blood samples taken in heel-prick tests to screen for serious conditions are being held for years by some hospitals and can be subsequently accessed by the police to identify people involved in crimes.
The samples can also be used by coroners and medical researchers for a variety of purposes prompting concerns that a national DNA database is being created by the backdoor.
Blood spot screening is carried out on babies aged between five and eight days old in order to test for a variety of serious conditions such as sickle cell and cystic fibrosis.
Government guidelines advise hospitals to store the samples for five years before destroying them, but some are hanging onto them indefinitely.
While the mothers of newborn babies are given leaflets explaining that their infant’s DNA will being stored, campaigners claim they are not told how long for or that they could be used for medical research and even police inquiries.In order to obtain access to an individual sample, the police would need to obtain a court order.
Andrew Lansley, the new Secretary of State for Health, has been urged to launch an inquiry into the practice.
Dr Helen Wallace of Genewatch said:
“We do not want to put mothers off having these tests as they are very important for their babies’ health, but the key issue really is how long these samples are being stored for. Some hospitals are hanging onto them indefinitely.
“Giving a new mother a leaflet does not amount to informed consent. We would like to see a system brought in across the whole country which would see all samples destroyed after a certain period of time.”
Details obtained through a series of Freedom of Information requests revealed that while some hospitals such as Alder Hey in Liverpool destroy all samples after the recommended five years, others such as Central Manchester University Hospital’s Trust has more than 1 million samples which it plans to store indefinitely.
Great Ormond Street hospital in London began storing samples in 1990 and preserves them for at least 20-years.
A spokesman for the Department of Health said:
“Blood spot screening is an important test carried out to identify serious conditions in newborn babies. Research on blood spots left over once screening tests have been completed have led to medical advances benefiting children and their families.
“There are strict safeguards in place that protect the sample once it is taken. Parents are well informed about newborn screening and the sample storage. They receive a number of information packs during pregnancy and afterbirth."
But campaigners claim mothers who have just given birth are not always in the best position to take in such information.
Shami Chakrabarti, director of Liberty, is to write to the Health Secretary to demand an urgent investigation.