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 initially….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.
There are other nagging problems with this system. Although the national website http://genes-r-us.uthscsa.edu/ insists that this harvesting of DNA is a highly visible program, my own polling of parents of newborns, or the grand parents had no idea that this was being done to their children and grand children. Further, not one knew that they had the right to demand the blood and tissue samples be destroyed after 45 days per written request. Even had they known, and the samples were destroyed (you would have no way of knowing if they really were) the information gleaned from them would still be available and on file…..in perpetuity.
Also unknown to at least the new parents in Minnesota, is that once that 45 days has lapsed, the state now claims that they “own” the DNA of that child. This claimed ownership now allows the state health agency to test, tamper, alter, sell, farm out, and utilize in any way they see fit, the DNA of your newborn. It can be manipulated, spliced with other DNA, and used in ways never intended under the screening program.
Now, there are forms that have to be signed that agree to this invasion of privacy, but the problem seems to be that this is not done during pre-natal care, but rather, at the time of delivery of the infant. These forms are produced when the mother is ready to deliver and is being admitted to the hospital. That’s when these “informed consent” forms are dragged out to be signed. This is no accident. Expectant parents simply sign what is put in front of them and are told they must sign to complete admission. Nice, huh? And none of them seems to be aware that what they are signing allows this right to have those additional blood and tissue samples destroyed. No matter, the damage is done and the results of those three extra blood drops are forever recorded and along with it, a lot of genetic information about the parents.
Although this is supposed to be an opt-in program, rather than an “opt-out”, Minnesota has decided to interpret the law differently. Our legislators have decided that opting out is the way it should be…..regardless of the law. With that in mind they have gone one step further and declared that if the parent doesn’t specifically opt out….they are presumed to have “informed consent” and have opted in.
I have to give the special interests in Minnesota their dues. Federal law and the courts have upheld the concept that human DNA cannot be patented. But these fine folks, representing insurance companies, medical institutions, and big pharma have found a way around that bothersome ruling. Using a compliant legislature they have made sure a system has been put in place that allows them to indirectly access what should be the most private of all information, the most identifiable information concerning an individual and in the case of medical and pharmaceuticals, to use it in any way they see fit once the state claims ownership.
In January 2007, a lady named Twila Brase president of the Citizens Council on Healthcare, issued a written testimony to the Minnesota legislature on the unethical and hidden uses of harvested DNA by the state. The 18 page document can be located at:
It is an eloquent treatise on the misuse of the DNA testing and the right of parents to be fully informed of what is really afoot in these programs.
Currently, we have a monumental effort under way by Sue Jeffers to petition the state to;
Oppose illegal State government ownership of the blood, DNA and genetic test results of newborn citizens in Minnesota. http://www.cchconline.org/petition/babyDNA2007.php I
In July 1997, solely by an executive decision of health officials-no law-the MN Department of Health began retaining the DNA-filled blood specimens of all newborn babies. The State now claims ownership rights to the DNA of more than 670,000 children (approx.70,000 births/yr).
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