This week I had the privilege of attending a picnic with Twila Brase, president and founder of Citizens Council on Health Care. The picnic was to celebrate the "victory" regarding "Baby DNA", or as some refer to it, Newborn Screening or Genetic Privacy.
The main issue is this: Who owns the individual DNA of a newborn? Let me explain. When a baby is born in Minnesota, there is blood sample taken from the heal and tested for 54 possible genetic defects....the most common and oldest one screened for is PKU - Phenalketonuria. If caught early, many of these potential maladies could be corrected and mental retardation can be prevented. This is a good test, a very helpful test in doing what we can to make sure Minnesota's newborns are healthy. The testing of the blood for this is not an issue for anyone.
What happens after the test is completed? Now that is a problem. The Minnesota Department of Health decides to keep and store this genetic material and warehouse it. It is then used for research by facilities like the U of M and Mayo Clinic. Minnesota law states that this material can only be held and used with permission, yet, absolutely no knowledge or consent is asked for or provided to parents of Minnesota newborns. At a senate hearing I was at, Senator David Hann (R-Dist 42) pointedly asked the two top officials from the Minnesota Department of Health about this subject. His question was "Out of the thousands of samples you are now holding, exactly how many do you have permission for?" The answer was shocking: ZERO. Our very own Minnesota Department of Health is breaking the LAW!
There was debate and discussion for quite some time on this, but the one comment that sticks in my memory was when Senator Paul Koering(R-Dist 12) asked, "How long exactly have they been doing this, and they don't have MY DNA do they?" There was, of course, no answer to this question from the Department of Health.
The DFL Majority in the House, with Rep Paul Thissen(DFL-Dist. 63A), introduced a bill, HF 1341, which proposed complete elimination of informed written consent requirements for the taking, storage and use of newborn blood and DNA. This bill would repeal the genetic privacy law for everyone born today, everyone born in the last 23 years, and everyone born in the future. This is yet one more example of your LIBERTIES being taken and yet the citizens of Minnesota are conveniently left out of the loop, completely unaware that their rights are being violated in this way.
The bill received much opposition from citizens and parents and although it was listed on the House calendar for three days, Rep. Thissen never brought it forward. The picnic this week was to celebrate this victory, and as was stated by three legislators who spoke there, it was the "citizens" with signs and stickers in opposition at the committee hearings that affected this bill being brought forward.
Rep. Thissen's dropping of this legislation is proof positive that you can indeed make a difference in Minnesota's laws and government, so don't ever underestimate your power to persuade when you show up and get involved.
Ms Brase and others believe there is a strong possibility that this bill will be brought up again in the 2010 session. Keep the pressure on your legislators to vote against this attempt once again to take away our liberties. I would whole-heartedly agree with Twila when she said,""There is nothing more personal, more private, more yours than your DNA and your unique genetic code. The law requires express informed written parental consent for the storage and use of newborn DNA, yet the Minnesota Department of Health refuses to follow the law. The rights of the 73,000 babies born each year in Minnesota are being violated." "This legislation should be dropped. The health department's attempt to repeal constitutional privacy rights and informed parent consent should be ended. Repealing genetic privacy rights at birth, and eliminating parent consent requirements for government storage, use and analysis of newborn DNA, would mean the end of genetic privacy rights for all future generations."
For more information about CCHC go to: http://www.cchconline.org/ There is an on-line petition that you can sign telling Governor Pawlenty that you oppose any change in the current law.