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UW MADISON RESEARCHER EXAMINING ROUTINE NEWBORN TESTING
WPR News - UW Madison researcher examining routine newborn testing
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Wednesday December 07, 2011
by Shamane Mills
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(UNDATED) A routine set of tests done on newborns can alert doctors to possible genetic diseases. A scholar at UW-Madison is examining how this can sometimes change lives.
Technological advances can bring ethical questions. In the case of newborn screening, parents may not realize that within 48 hours after birth doctors do state-required blood tests to check for genetic disorders. The expansion of genetic testing in newborns is the subject of a new book by Rachel Grob, a visiting professor at the UW Law School in Madison. She says because parents often aren't consulted about the tests, it can be extremely stressful if a potential problem is detected .
"It is a screening test so then there's a lot of followup and waiting and anxiety and uncertainty about whether a diagnosis will be made or not and then sometimes after diagnsosis is made it's not always clear what that diagnosis will actually mean," she says.
Grob does not take a position for or against newborn testing. But she says currently there's very limited parental input on what disorders to test for and the sociological impact of the tests: for instance, how it affects family dynamics. Wisconsin tests all newborns for 47 genetic disorders including sickle cell anemia and cystic fibrosis. Many diseases can be better managed if detected early but Grob says not all.
"And I also think that we need a policy dialogue that will allow us to deal with what we want to test for in the future in a robust and inclusive way," she says.
Grob says rapid technological advancements could 'move the line' regarding what parents need and want to know about their child's condition--and which tests should be voluntary and which should be mandatory.
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