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Judge: State can take, keep newborns' data

Posted By Bob Unruh On 12/04/2009 @ 1:00 am In Front Page | Comments Disabled

A judge in Minnesota has ruled the state can routinely collect, analyze, store and retrieve biological samples that include DNA from all newborns even though a state law specifically requires prior written authorization.

The decision from Hennepin County District Judge Marilyn Rosenbaum dismissed a case brought by members of nine families who alleged the state was going beyond what it was authorized to do.

Although not part of the lawsuit, Twila Brase, president of the Citizens’ Council on Health Care, has been monitoring the dispute since its beginning, battling the state Department of Health, which reportedly has been taking and warehousing newborns’ genetic makeup for years but not following “written consent requirements.”

The group has cited a number of cases in which the state’s genetic-privacy act law apparently was ignored, or there was an attempt to ignore it.

For example, one grandmother reported:

“My daughter signed a paper stating she did not want
the PKU test done because of the DNA stealing (I was there when she
did that). The nurse huffed out of the room saying that stuff doesn’t
happen. After my grandchild was born, a different nurse took the
baby. My daughter heard my granddaughter start crying. She found out
her heel was getting pricked. My daughter became furious stating
that she signed off on not getting the test. The nurse said there was
nothing in her chart saying that. My daughter demanded the blood
sample back. The nurse said they’d destroy it, but my daughter
demanded it back and got it.”

Brase has warned the collection and assembly of DNA on an entire generation of citizens largely is unnoticed, but such newborn screening “represents the largest single application of genetic testing in medicine.” She’s issued an extensive report on the problem.

“Suppose … expanded screening of an infant reveals not a fatal and incurable disease but instead a host of genetic variants, each of which merely confers elevated risk for some condition or other,” her report said. “Who is to say at what point an uncovered defect becomes serious enough to warrant preventing the birth of other children who might carry it? At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?”

In this case, Brase said, the judge assembled only “extremely weak” arguments.

“There is no law on the books in Minnesota to support the health department’s current practice of indefinite storage, use and sharing of newborn DNA for research without parent consent. The law that is on the books, the Minnesota genetic-privacy law, forbids it,” she said.

“We understand that the order will be appealed. The appeal is essential for the protection of individual genetic privacy, DNA property rights, human subject rights, and parent and individual consent rights. We look forward to the appeal,” she said.

She explained the state’s 2006 genetic-privacy law requires informed and written consent for the collection, storage, use and dissemination of genetic information contained in the blood spots taken routinely from newborns.

But the judge found that “the blood samples taken pursuant to the (newborn screening) program are biological samples, not genetic information as defined.”

However, Brase told WND the program to which the judge referred has an opt-out provision for parents, but they often are not told.

Then the privacy law, adopted in 2006, specifically requires written informed consent for the collection, stating, “Unless otherwise expressly provided by law, genetic information about an individual: (1) may be collected by a government entity … only with the written informed consent of the individual; (2) may be used only for purposes to which the individual has given written informed consent; (3) may be stored only for a period of time to which the individual has given written informed consent; and (4) may be disseminated only: (i) with the individual’s written informed consent.”

The judge dismissed as irrelevant the opinion of an administrative law judge who ruled in 2007 the Minnesota Department of Health was violating the state genetic-privacy law by storing and conducting genetic research on newborn blood which has been collected solely for the purpose of newborn genetic testing.

WND reported earlier when Brase’s report said the concept of “identifying” those who would be “unsuitable” for reproduction is enough reason for parents to be alarmed.

Brase said most states do not require parental consent for newborn genetic testing or for the government to keep the genetic results. Most states now keep DNA results for a period of time – some indefinitely.

Further, her report said most parents “have no idea that government is doing the testing or retaining the data and DNA.”

“It is not hard to imagine the day when any discovered but nonsymptomatic condition could
become a ‘pre-existing condition’ for which private insurers would not pay. The eugenic
implications are obvious. Thus, the growing collection of genetic test results and newborn DNA
could easily enable a eugenics agenda on the part of government agencies and private industry,” the report said.



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