Newborn blood used in research angers parents
source: http://www.washingtonpost.com/wp-dyn/content/article/2010/02/08/AR2010020802731.html
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A critical safety net for babies - that heelprick of blood taken from every newborn - is facing an ethics attack.
After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus' developing heart or which genes trigger childhood cancers.
But seldom are parents asked to consent to such research - most probably don't know it occurs - raising privacy concerns that are shaking up one of public health's most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.
Michigan just moved 4 million leftover blood spots into a new "BioTrust for Health," planning a public education campaign about the research potential and how families can opt out.
Advisers to the U.S. government hope to have national recommendations by spring on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.
"It's a critical thing that we take action," says advisory board member Sharon Terry of the nonprofit Genetic Alliance. She says distrust over the leftover blood spots threatens public confidence in newborn screening itself.
http://www.washingtonpost.com/wp-dyn/content/article/2010/02/08/AR2010020802731....
After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus' developing heart or which genes trigger childhood cancers.
But seldom are parents asked to consent to such research - most probably don't know it occurs - raising privacy concerns that are shaking up one of public health's most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.
Michigan just moved 4 million leftover blood spots into a new "BioTrust for Health," planning a public education campaign about the research potential and how families can opt out.
Advisers to the U.S. government hope to have national recommendations by spring on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.
"It's a critical thing that we take action," says advisory board member Sharon Terry of the nonprofit Genetic Alliance. She says distrust over the leftover blood spots threatens public confidence in newborn screening itself.
http://www.washingtonpost.com/wp-dyn/content/article/2010/02/08/AR2010020802731....
