Newborn screening blood spots are collected on virtually all newborn babies to test for rare and hidden diseases. These diseases need to be identified and treated prior to the onset of symptoms to avoid lifelong disability or death. The Newborn Screening Program has been ongoing in Minnesota since 1965 and has saved hundreds of individuals and their families from the worst effects of these diseases. Newborn screening samples are also useful for research and quality control to improve the program. They also are a close mirror of the population since they are collected on virtually all newborn babies. This is potentially very bad news for all of us who live here because it would be a significantly hamper the NBS program in their work to develop new tests for newborns and to assure that the program maintains its high quality of testing. This also means that we may lose a population-based repository of biological samples which are needed to determine the frequency and health outcomes associated with subtle genomic changes. That is the bad news.
The good news is that this may force Minnesota to develop a system of informed consent that will result in a public that is much better informed about newborn screening, in specific, and genomics, in general, including the need for research and the implications of genomic information and technologies for health. We need to have a basic understanding and support from the citizenry if we are to move this forward.
This feels a little like losing a battle to win the war. We will be following this very closely. The story from the Pioneer Press is below in its entirety.
From the Pioneer Press, July 12, 2007:
Minnesota Health / Activists: Destroy blood samples State wants infants' blood kept for study, but two judges say no
BY JEREMY OLSON
Article Last Updated:07/12/2007 09:50:12 PM CDT
Emboldened by two favorable judicial rulings, a Twin Cities privacy advocate is demanding that the Minnesota Department of Health destroy thousands of newborns' blood samples that it kept indefinitely without explicit permission from parents.
The demand by the Citizens' Council on Health Care follows a July 3 ruling in which Minnesota's chief administrative law judge, Raymond Krause, said the Health Department lacked legal authority to keep the samples, even if it did so to improve public health.