a child's right to privacy and public health

I've been passively following this developing story in Minnesota for a while because it hits close to our project at MCW. A growing group of privacy advocates in Minnesota is concerned about mandatory newborn genetic screening. They claim that the screening amounts to involuntary genetic testing with unknown future implications for employment and insurance. You can see the story here: http://www.startribune.com/1244/story/1541400.html.

It is a concern. From a public health perspective, you want to catch these deadly diseases and screening does do that. Newborn screening absolutely saves lives. But it means that the state has access to a child's personal genetic information, and as such has access to the family's genetic information. Of course, the state has access to all sorts of information about all of us, but when you throw genetic information into the mix, you inevitably raise concerns about the potential for genetic discrimination and eugenics.

Of course, the parents who have a child who is alive because of screening or lost a child because screening was not offered in their state, most passionately wants screening to be required. Privacy means very little to you when faced with the prospect of something that could save your child's life. Still others remain concerned about government intrusion on private lives, and the unknown future consequences. Check out more parent and citizens responses here: http://www.startribune.com/blogs/comments/?p=54#respond