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Genetic testing

Posted at 3:04 PM on April 17, 2008 by Michael Marchio

The Senate had a pretty light day today, approving a few bills and then recessing to take up the bovine tuberculosis bill, but the House has a whopper of a debate on genetic testing of newborn babies. SF3138, sponsored by Rep. Paul Thissen (DFL-Minneapolis)

Concerns came out with this issue was before the Legislature in 2006, read more here.

The dispute over newborn genetic information will again force legislators to balance privacy and public health. This time the debate centers on five drops of blood that are collected after a baby is born. State law requires the blood be analyzed so the health department will know if a baby has certain diseases. But the big question is what is done with that blood after the test is done?

The Minnesota Health Department keeps both the data and the blood, and concerned parents and privacy advocates are worried. Republican Rep. Mary Liz Holberg worries those simple blood drops will reveal more about a person as genetic testing improves.

"Who's to say that 30, 40 years from now, you're going to have probably a good share of the residents of the state of Minnesota with their blood samples in a state owned database and then what happens when they want to use it for other purposes?" Holberg asked.

Holberg and others say they're concerned that health insurers or employers may discriminate against people because of a condition identified by a genetic test.

Rep. Holberg raised these same points in today's session, and offered an amendment that would require parents to be given a Tennessen warning before the test is conducted.

This exchange between Rep. Ryan Winkler and Rep. Steve Gottwalt probably best summarized the feelings in the chamber.

Rep Winkler:

"The issue is, whether the rights of a parent to genetic information is more important than the right of a child to a healthy life. Any time you adopt an amendment similar to Rep. Holberg's or other amendments to make it less likely that children will go through this testing process, you're making it more likely that more children will suffer from...profound mental retardation, growth failure, hearing loss and death. (This was from a document produced from the Department of Health) The issue is, is the parent's theoretical interest in privacy more important that the child's right to have a healthy outcome and a healthy life."

Rep. Gottwalt:

"This is about rights, but its not about the rights that Rep. Winkler just pointed out...The first right is the parent's right with their child. They have the ultimate right to protect their children, not the state. And having informed consent and opt-in is important. It could be done in a manner that still allows for the testing, that still allows for the treatment. But the parents have the right, not the state, not the hospital, not the doctor."

Her amendment failed, on a 64-69 vote, but a later one by Rep. Joyce Peppin that would make a signature by parents sufficient to opt-out of the testing passed by a voice vote. While I think there is a pretty strong argument that this testing is a good idea, if someone for whatever reason didn't want to participate, a signature seems like it should be enough. Good compromise, lawmakers.

Tomorrow I'll be doing a comprehensive update on how your teams fared this week, so check back.