Don't Trust Government on Baby DNA

 


January 15, 2014
 
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Let’s take a break from Obamacare for a moment. Did you know State governments keep the DNA of newborns without parent consent?  Did you know CCHF initiated a lawsuit with nine families in 2009 against Minnesota’s health department for storing and using Baby DNA without parent consent?
 
All across the country state health departments are taking newborn DNA within 48 hours of birth, and many states store it long-term for genetic and other research. Parent consent is usually not required. Hospitals prick the baby’s heel, drip the baby’s blood (DNA) onto a card with filter paper, and send it to the government.
 
This means the DNA of every person born in America is stored by state government for some period of time. Fully 17 states keep some or all baby DNA 10 years or longer for research. Some state health officials, as in Minnesota, are determined to claim Baby DNA as their own. That’s why . . .
 
Monday’s Baby DNA victory is bittersweet.
 
On one hand, parents and children won because the Minnesota Department of Health (MDH) will destroy the 1.1 million baby DNA cards plus nearly as many newborn genetic test results they’ve accumulated daily since July 1, 1986. This action is the result of the 2009 lawsuit, the November 16, 2011 Minnesota Supreme Court ruling that found the department in violation of Minnesota’s genetic privacy law, and the terms of Monday’s settlement agreement.
 
On the other hand, the department has successfully been working to re-establish government claims on newborn DNA and genetic data. More on that in a moment. In addition, although MDH paid attorney’s fees ($975,000), they paid no penalties to the families who brought the lawsuit as authorized by the Minnesota Data Practices Act. Thus the precedent set by this ruling is “no penalties” for egregious and willful privacy violations.
 
Congress is not helping. The federal government gave $25 million in federal grants to four institutions last September to create a genomic sequencing process for newborn DNA – a process for government to fully detail the genetic profile of every baby at birth. If it sounds like the provocative futuristic 1997 movie Gattaca, that’s because it is.
 
 
In our organization’s 11-year journey to stop the nationwide genetic grab of state governments, we’ve discovered it’s not even enough to win in the Supreme Court.
 
Minnesota’s health department has been very clever. Over the last two years they have gotten the law changed to prohibit this sort of lawsuit from ever happening again in Minnesota and they’ve gained new access to and authority over private data and DNA.
 
Here’s how.
 
In 2012, MDH wrote a bill that included parent consent, BUT it removed all newborn screening processes from the consent requirements of the state genetic privacy law and its associated penalties for violations. Thus, there are no longer any penalties for violating the consent requirements in the newborn screening law. Without penalties, what lawyer would ever take another case?
 
In 2013, to prevent any future lawsuits for other data and DNA long stored by MDH without legislative authority, the Health Department wrote a bill to build a Minnesota Biobank of medical and genetic data, including DNA specimens, for research. Despite our strong opposition to and testimony against it, the Biobank became law (Minn. Stat. 144.192). No consent is required:
 
Subd. 3. Biological specimens and health data for program operations, public health practice, and health oversight. (a) The commissioner may collect, use, store, and disseminate biological specimens and health data to conduct program operations activities, public health practice activities, and health oversight activities. Unless required under other applicable law, consent of an individual is not required under this subdivision. … [Emphasis added]
    
Currently newborn DNA and genetic test results are excluded from the Biobank, but the language added over the last two years would require only a word or two to let the State reclaim baby DNA and genetic test results. Imagine a two-word change buried in a 200-page bill maybe two or three years from now. Would we find it in time to oppose it?
 
In 2014, MDH is planning to resurrect long-term Baby DNA storage for research. We’ll need your help to oppose it. Health officials are writing a report to push “comprehensive, long-term storage” for Baby DNA and genetic data. Their report is due to the 2014 legislature in February. State health officials are not to be trusted. They made up their own law. They refused to obey the law. And they fought parents all the way to the Minnesota Supreme Court, all the time claiming what they were storing and using was not “genetic information.” Expect an attempt this coming legislative session to undo even the 2012 consent requirements.
 
There is a solution. Legislators from every state must begin now to move newborn screening out of government public health laboratories and into hospital laboratories so health officials never get their hands on Baby DNA or genetic data.
 
Help us stop the government’s genetic grab. Health officials from California to Maine have claimed ownership to citizen DNA, starting at birth. We must take it back. Please donate today to our efforts to protect DNA ownership and your genetic privacy rights!
 
Working to make sure Gattaca is just a movie,
 
Twila Brase, RN, PHN
President and Co-founder