Twila Brase and Rep. Tom Emmer (R - Delano) explain SF3138 in a CCHC press conference on May 1.	Senator Betsy Wergin (R - Princeton) offering an informed consent amendment to SF3138, which was defeated.

Unbeknownst to most parents, the Minnesota Department of Health has been surreptitiously collecting, warehousing and experimenting with the DNA of newborns since 1997. 

Minnesota’s genetic privacy law (MN Statute 144.125) requires the informed consent of parents before health officials can collect, store or disseminate the genetic material. It specifies that an individual’s genetic specimen may only be used for purposes for which the individual has given consent, may only be stored for an amount of time authorized by the individual and may not be disseminated without the affirmative consent of the individual. 

The Minnesota Department of Health ignored the law though and continued its practice of collecting, storing and researching newborn DNA with an assumption of implied consent, and without parental notification.

Prompted by a 2007 lawsuit advanced by Citizen's Council on Health Care, administrative law judge Barbara Neilson ordered a stop to MDH’s practice of collecting newborn DNA without parental notification and consent. The judge’s ruling required that parents of newborns be given a Tennessen notice, which is required for most data collection by government agencies. It would fully inform parents of state government's involvement in the testing program, the parent's right to refuse government collection of DNA, how the material would be used and who could access it if parents permitted their child to be tested for possible genetic conditions.

The judge also required explicit opt-in parental consent for the retention of newborn blood and DNA, and for dissemination of blood and genetic information to genetic researchers.

Countering MDH's ten-year-old executive decision to retain and disseminate newborn blood without parental knowledge or consent, Judge Neilsen concluded that Minnesota law does not authorize such retention and dissemination, and that such activities specifically violate the genetic privacy law. 

After losing an appeal of the judgment, then Commissioner of Health Dianne Mandernach convinced the  legislature to pass a bill (SF3138) exempting all elements of the MDH’s newborn testing program from informed consent provisions of the genetic privacy law.

While the bill does strengthen language requiring that parents be informed of genetic testing and storage, it simultaneously weakens the privacy law through tricky language that will have the effect of removing a requirement for written consent.

To date, the state has collected and claimed ownership of the DNA of 780,000 children born in Minnesota, without ever obtaining permission to do so, or even informing parents that it was taking place. Undeterred by legal judgment, MDH retains its warehouse of unlawfully collected DNA and has convinced the legislature to sanction 10 years of illegal practices and allow the continued harvest of newborn blood samples without explicit parental permission. 

Read CCHC President Twila Brase's piece, Genetic Information Deserves Protection in the Star Tribune.

Parents who wish to have their children's blood samples destroyed can complete a Directive to Destroy Newborn Blood Samples and submit this form to the Minnesota Department of Health.

Action Alert: Tell Governor Pawlenty to protect our genetic privacy.