Twila Brase: Genetic information deserves protection

A proposed law would strip patients of their right to privacy. Pawlenty should veto it.

By TWILA BRASE

Last update: April 28, 2008 - 6:40 PM

State health officials want full access to the DNA of citizens. Their legislation to undo the state's genetic privacy law has already been passed by the Minnesota House and Senate.

What will Gov. Tim Pawlenty do?

The 2006 Minnesota Genetic Privacy Law does what all of us want it to do. It requires written informed consent prior to the collection, storage, use, or dissemination of our private genetic information by government and others.

Specifically, the law states that our genetic information may only be collected and used if we give our written informed consent; it may be stored only for as long as we consent; and it may only be shared with others, including researchers and pharmaceutical companies, with our consent. The consent to allow sharing for specific purposes expires in a year and must be signed and dated.

This is all good news -- unless Senate File 3138 becomes law.

This legislation would allow the Minnesota Department of Health (MDH) to exempt the collection, storage, use and sharing of newborn DNA from the informed consent requirements of the genetic privacy law. Without informed consent, MDH would be allowed to contract with hospitals statewide to prick the heel of newborns, use and analyze the baby's DNA into adulthood, and give the DNA-filled blood spots to researchers and others.

If this legislation passes, the informed consent protections of today's genetic privacy law will not protect any baby born after July 1, 1997 -- the day health officials began building a government "DNA warehouse" for the purpose of genetic research. On that day, without legal authority or parent consent, MDH began keeping baby blood and storing it indefinitely.

Today, according to health officials, the DNA of more than 780,000 children has been filed and claimed as state government property. Their parents have no idea. By the department's own admission, at least 42,210 of these children have been subjects of genetic research, again without parent knowledge or consent. Each year, approximately 73,000 children are born and their blood is added to the state's DNA collection.

In March 2007, an administrative law judge ruled that the genetic privacy law requires informed consent requirements for the health department's storage, use and sharing of blood collected through the newborn genetic testing program. The commissioner of health appealed the decision and lost. Rather than comply, health officials drafted this year's legislation to exempt all elements of the testing program -- specifically collection, storage, use and dissemination to researchers -- from the genetic privacy law.

If the bill becomes law, parents will find it difficult to protect their child's genetic privacy. At one of the most vulnerable and exhausting times in life -- the birth of their baby -- they will have to be both knowledgeable and assertive. According to the newborn genetic testing law on the books, parents have the right to object to the taking and storage of blood, but not the right to be fully informed about their right to object. The burden will be on parents to figure it out.

Senate File 3138 violates parent rights, privacy rights, patient rights and DNA property rights. Citizens young and old have the right to informed consent and genetic privacy. They also have the right to not be research subjects, to not incriminate themselves through their genetic codes, and to be free from involuntary genetic profiling and genetic registration.

If Pawlenty fails to use his influence or his veto pen to protect the genetic privacy rights of citizens, individual DNA and private genetic codes will become government property. What will the governor do?

Twila Brase is president of the Citizens' Council on Health Care, which describes its mission as advocating "for patient and physician freedom, medical innovation, and the right of citizens to a confidential patient-doctor relationship."

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