ACLU opposes new law allowing state to keep newborn blood samples


A bill signed into law earlier this week by Gov. Mark Dayton allows the health department to collect and store blood samples taken from newborn babies for an indefinite period of time, unless parents opt-out of the program.

And that's the problem, ACLU-MN Executive Director Chuck Samuelson argues. People shouldn't have to opt-out -- instead, they should opt-in.

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"In government and corporate setups where people have to opt-out of the collection of data, we believe they should opt-in," Samuelson tells us.

The law is meant as a public health measure. (You can read the bill for yourself here.) Blood samples are used to check for more than 50 rare genetic disorders, some of which are potentially fatal but can be treated easily if identified early. Later on, samples are used for medical research.

Samuelson supports those efforts, but argues the burden should be on the state to persuade people that handing over a baby's blood sample is a good thing to do.

"There's a huge problem with [doctors and state officials] not being articulate with parents about how important it is that these samples be kept and used in various research programs to improve the health of all children," he says. "You can see how we would make the argument. Personally, I've got no problem with it -- keep it and do [the research], that's how you make life better, and if you don't want to participate in screening and there's consequences, then that's your problem."

"It's the same way I feel feel about motorcycle helmets," Samuelson continues. "You can ride without a helmet, but if you're in an accident and your noggin gets split open, your insurance company shouldn't be on the hook."

The new law comes in response to a 2011 Minnesota Supreme Court decision that threw out a previous state program under which the Department of Health simply kept newborn blood samples, no questions asked.

While the ACLU takes issue with the new law, Samuelson says Minnesota's blood sample collection system still compares favorably with what goes on in many other states.

"Most other states to be brutally honest try to limit parental choice, and I think bluntly they're missing a huge learning opportunity," he says. "Fundamentally the way you stop [the spread of false beliefs about the dangers of vaccines, for instance] is you talk to kids when they are at the very beginning of life and explain it to them -- we should as a society think about this as a long-term issue, and within society we need to have privacy and need to get government off our back but also acknowledge we aren't solo actors floating through life."

"We need to talk about the need for babies to be tested, for research to be done on those samples so we can discover new cures for disease and new vaccines and all that stuff, but in a first world country, I think that's possible without cramming it down peoples' throats," Samuelson adds.

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