Dionne Cordell-Whitney reports: Minnesota collects DNA samples from newborn children, then illegally keeps the genetic information and shares it with third parties without informed consent of the parents, parents say in a class action. Lead plaintiffs Nathan and Katrina Anderson sued the state, the Minnesota Department of Health, and its commissioner, in Hennepin County Court. They claim that state violated its own Genetic Privacy Act by collecting, storing and disseminating their children’s genetic information without informed consent. Read more about the lawsuit on Courthouse News.
Over on Privacy Lives, Melissa Ngo blogs about an issue I’ve discussed a number of times on this blog: the collection, storage, and use/misuse of newborns’ blood samples. Melissa points us to a discussion on Minnesota Public Radio: … On Tuesday, parents, doctors and researchers urged state lawmakers to reject proposed restrictions on Minnesota’s Newborn Screening program — changes that could keep other parents from such lifesaving results. Amendments in two Senate bills would require the Minnesota Department of Health to promptly destroy the blood samples that are collected from newborns to identify rare medical disorders that aren’t obvious at birth. “Our genetic information is ours … until there is consent for the use of our genetic information, no research should happen.” Currently, the agency stores the blood samples indefinitely so they can be used for quality control tests or disease research. The new rules would allow parents to give their written permission to store the material up to a maximum of two years. Read more on MPR. It’s probably one of the more balanced discussions of the issue that I’ve seen in a while. Some of the issue comes down to transparency and consent. Why is so that very hard for governments and researchers to embrace? That if you explain what you want to do, explain how it will benefit the individual or others, and then ask for consent, many will consent? It’s always seemed to me that government simply doesn’t trust its own citizenry and takes a “we know best” attitude that justifies them riding roughshod over crucial consent and ethical issues.
The Minnesota Department of Health announced new measures Friday designed to address concerns that a program of blood screening for Minnesota newborns could violate patient and family privacy rights. In a key step, the department will propose legislation this year giving it the right to keep infants’ blood samples for two years, as part of a state database on disease treatment and prevention, then destroy the samples unless parents give consent for continued storage. Read more in the Minneapolis Star Tribune
Marti Oakley writes: Unknown to most new parents, or those who became parents in the last ten or so years, DNA of newborns has been harvested, tested, stored and experimented with by all 50 states. And all 50 states are now routinely providing these results to the Homeland Security Department. No doubt we can all see the benefits in testing for genetic disorders or genetic traits and tendencies that could be more adequately dealt with, in some cases actually deterring the onset of life-time illness, but that seems not to be the real thrust of these programs. It may have been initiallyâ€¦.but not now. As with all good things, there are always those who seek the more evil path, in essence turning what should have been a life saving tool, a preventative measure into something insidious and inhumane. This is what has happened to this national effort. Here in Minnesota the state tests for 56 various genetic disorders and variants. At least 1/3 of these tests produce a false positive meaning that a flaw was identified that actually did not exist. Regardless, that false positive becomes part of the permanent record of the child and follows them for the rest of their lives as does any true positives. This means that the child will eventually and most likely face discrimination in employment and the ability to gain health insurance at any cost.
Tony Kennedy reports the latest on controversial newborn screening legislation in Minnesota that has been challenged in the courts: A state health program that takes blood samples from Minnesota newborns to screen for more than 50 diseases and disorders can continue despite a legal challenge on genetic privacy grounds, the Minnesota Supreme Court ruled today. But in a ruling that reverses a lower court decision, the court placed new restrictions on the Department of Health’s ability to store the blood samples and use them for additional studies. Read more on the Star Tribune.
It’s been an issue in Minnesota for years, but now WTHR alerts the public that Indiana also stores newborns’ blood and DNA without parental consent. Bob Segall reports: As word of an Eyewitness News investigation spreads through Holliday Park, parents admit they are surprised. “You’re kidding, right? I had no idea,” said Ramon Moore, playing catch with his 7-year-old son, Xavier. “I didn’t know that at all,” agreed Holly Ruth, holding her 3-month old son, Lincoln. “Nobody ever told me,” echoed Mallory Ervin, chasing her 4-year-old son, Theo, on the playground. Xavier, Lincoln, Theo and millions of other Indiana children all have something in common: the state of Indiana is storing their blood and DNA in an undisclosed state warehouse. “I’m curious why they didn’t share that,” said Ervin. “It now makes me think ‘what are they hiding?’ As a parent, I’d absolutely like to know.” 13 Investigates has discovered the Indiana State Department of Health is holding the blood samples of more than 2.25 million Hoosier children – without their parents’ permission. If your children were born in Indiana since 1991, chances are their blood and DNA is among the state’s massive collection. Following WTHR’s investigation, state health officials are now seeking input on what to do with the blood samples after admitting they don’t have the consent needed to use them for anything. Read more on WTHR. Thanks to Joe Cadillic for this link.