Newborn-screening bill would end genetic privacy

  • Updated: March 14, 2014 - 6:38 PM

Better to require parents to give consent than to have to opt out.

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A lab technician reviewed results of a newborn screen at the Wisconsin State Laboratory of Hygiene on the University of Wisconsin-Madison campus.

Photo: Kristyna Wentz-Graff • Milwaukee Journal Sentinel/MCT,

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In a recent commentary, five hospital executives tried to frighten Minnesotans into thinking that if a proposed bill isn’t passed in the Legislature, their babies’ lives will be in danger (“The case for keeping newborn test results,” March 1).

The truth is that Senate File 2047 and House File 2526 would not change newborn screening. Rather, this legislation focuses on what would happen after the screening is done. It would repeal a current law that requires parental consent for the government to store and use newborn DNA and babies’ genetic data. Essentially, this legislation ends genetic privacy.

A Minnesota Supreme Court decision in November 2011 ruled in favor of 21 Minnesota families who sued the Minnesota Department of Health (MDH) over its secretly storing their babies’ DNA. MDH, which began storing and using genetic test results and baby DNA in 1986 without legislative authority, had argued that newborn-screening blood spots are not genetic information. But the Supreme Court found it in violation of the state’s genetic privacy law. A settlement earlier this year required MDH to discard the illegally stored DNA of about 1 million babies.

Now, MDH and others who support research without consent are attempting to get around that ruling. The new legislation, which two committees already have approved, will undo the consent requirements now in law because of the Supreme Court decision and put the handling of our children’s private genetic data back in the hands of the government.

MDH and some hospital executives think they should be able to store and conduct research on the genetic blueprint of 70,000 babies born every year in Minnesota — forever. The Citizens’ Council for Health Freedom strongly disagrees.

We believe in newborn screening for the health and safety of our state’s youngest residents. But it is unnecessary to keep their genetic information without parental consent. As current law requires, 71 days after newborn screening is completed, the blood spots used for the tests should be destroyed unless parents give written informed consent. Currently, after 24 months, genetic test results are also destroyed, unless there is parental consent.

This year’s bills replace consent with dissent, meaning parents must first learn about the practice of storing their babies’ genetic data and then apply to the government to leave the storage and research program. Today, the Health Department can’t do anything until the parent signs a consent form — and we think that’s the way it should be. The ACLU, in a May 14, 2010, letter to the federal newborn screening advisory committee, agreed, calling for express informed consent.

Parents also think that’s the way it should be. A study out of the University of Michigan, “Not Without My Permission,” found that three-quarters of parents support parental consent for research. They want to be asked before their child’s DNA is analyzed. If they approve of the research, they’ll likely give their consent.

Permission will become even more important as genomic sequencing advances. Last September, the federal government awarded $25 million to four institutions to develop a genomic-sequencing program for newborn screening. This would detail every part of the child’s genetic code — at birth. Under the proposed Minnesota legislation, the genetic code, along with the child’s DNA, would be held by state government. As cost containment becomes the push of health care reform, where could this lead? What could government officials decide to do when they hold the genetic code of every child — when they know the potential health care conditions of every citizen from birth?

Proponents of the legislation say parents would still have a choice. They could opt out. True enough, but that’s not consent. It’s not even a real choice. The fact is, many parents can’t remember the newborn screening being done. If they remember, they think it is the hospital laboratory doing the test. They have no reason to think that it’s a government program or that the government would store and use the child’s DNA for research without their consent.

Minnesota has had parental consent requirements for two years. If this legislation becomes law, we’ll move from sunshine back to secrecy. This must not happen.

Twila Brase is co-founder of Citizens’ Council for Health Freedom. She is also a public health nurse.

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