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UNDER ATTACK:  Your Parent, Patient, Privacy & DNA Property Rights!

While the MN Genetic Privacy law today requires informed written consent before government or others can collect, store, use or share YOUR genetic information….state government bureaucrats and special interests in a state genetic committee want to eliminate the consent requirement next year!

The Threat                

• NEWBORN DNA: The MN Genetic Information Working Group has met for a year. During these meetings, the issue of newborn genetic testing…and storage and use of newborn DNA-filled blood spots…has become very contentious. (see quotes below)

• BIG GOVERNMENT: Working group members from the Minnesota Department of Health (MDH) want government control and ownership of citizen DNA for “public health” purposes. Their recommendation seeks to undo the informed written consent requirements of the 2006 genetic privacy law (MN Statutes 13.386).

• INVOLUNTARY RESEARCH: The lawyer representing Mayo Clinic in the working group wants all blood, tissue and body parts taken in the course of your medical care to be available without your consent for medical and genetic research by your clinic, hospital and laboratory.

• OPPOSED TO GOVERNOR’S VETO: Mayo’s lawyer also stated during one of the meetings that Governor Pawlenty’s decision to veto the 2008 DNA warehouse bill should not have happened (Notice: Mayo has a contract with MDH to do genetic testing of all babies).

Your help is needed now!

The 2009 legislature will soon be asked to decide whether to protect or eliminate your consent rights, privacy rights, patient rights and DNA property rights.

A report from the MN Genetic Information Working Group will go to the 2009 legislature in December.

Twila Brase, CCHC’s president and an appointed member of the working group, has pressed for retaining informed written parent and patient consent requirements. She has said that government and private institutions must be required to obtain informed written consent for almost all collection, storage, use and dissemination of biological specimens (blood, tissue, fluids, organs, hair, etc). She has repeatedly told the working group:

  • Individuals need the right to protect themselves from having their genetic data used against them and their families.
  • No person should be forced to be an involuntary subject of medical and genetic research.
  • Genetic experts are already warning that there can be no guarantee of anonymity in research because of the proliferation of databases.
  • Even if DNA and genetic testing data could be anonymized, individuals should not be forced to participate in research they may find objectionable.

Today, the Mayo attorney told members of the working group that if they accept CCHC’s recommendations regarding research, Minnesota would become an “outlier.” Twila Brase disagreed, saying Minnesota would instead become a leader.

Help us protect your parent, patient, privacy and DNA property rights!

If you haven’t already done so…please take CCHC’s very brief DNA OWNERSHIP SURVEY today!

Please ask everyone you know to take the survey as well!

 

STATEMENTS HEARD AT TODAY’S MEETING OF THE   MN GENETIC INFORMATION WORKING GROUP:

“People have to be very careful in weighing the risk of discarding  specimens…If you limit the ability to test these spots or keep these spots, you’ll limit the ability to test for lethal conditions in the future.”

(Ruth Lynfield, MDH Epidemiologist, arguing for continued government retention of newborn blood taken from all babies at birth)

“Yes, that’s right…That’s how it’s historically been done.”

(Lynfield, MDH, in response to a member’s question about whether newborn blood spots now retained by the state health department have already been used for research to develop additional newborn screening tests)

“Yes, perfectly healthy children’s blood spots were used.” (David Orren, MDH attorney, in response to a question about the Mayo Clinic’s research project on Wilson’s Disease using government-retained newborn blood spots – without parent consent or knowledge)

“Having a population-based [blood spot] repository is incredibly important.”

(Lynfield, MDH)

“Public health is such a broad purpose.”

(Orren, MDH, arguing against parent and patient written informed consent requirements for secondary uses of DNA, biological specimens, and genetic information retained by government)

CCHC ACTION ALERT info@cchconline.org