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A story by Chen May Yee published on November 10, 2007 in the Star Tribune highlights the issues raised by the State's newborn screening program. Public health officials, medical professionals, parents of kids with metabolic disoroders and other advocates say that the program needs to remain mandatory so that no child is missed. Advocates for privacy and personal autonomy say that genetic testing should not be done on babies without consent of the parents. Others are against the state having access to their children's blood sample and / or their personal information.
The StarTribune has set up a readers' forum for people to tell their stories and to comment. At this writing, there were some 63 entries from several perspectives. The most poignant entries are from parents whose kids lives or health have been affected by the conditions that are included in the screen, both the kids who have been saved and those who might have been, if screening had been available for them. Many of the privacy advocates do not want to nix the program, but do feel it is important for parents to provide consent for testing. A minority feel that the program is too risky because it is associated with the government. Check it out and add your comments to this growing conversation.
I am glad to see that this issue is being debated openly. It is important to get all of the viewpoints and perspectives into the open. I think the way to develop public policy on how a population-based, state run genetic screening program for these serious conditions is to encourage more discussion, not less. We need more people to learn more about these issues and contribute to the public discussion to inform policy and provide a public program that reflects the needs and values of Minesota's citizens.