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For decades, hospitals have conducted blood tests on newborns, checking babies for various conditions, treatable and not. Today's less costly tests, genomic research, and technological advances, coupled with differing policies across states, worry some privacy and ethics advocates.
Whereas some states allow parents to opt-in for testing, others have an opt-out approach. Critics argue parents have little to no say in whether this data is collected, where and how long it's stored, and what organizations do with this information. Lower genome testing costs sparked debate about researchers' right to use this information; who should learn of infants' chronic conditions and when; and the type of data government, researchers, payers, or healthcare providers can cull. Other concerns surround the storage and transmission of data that's not de-identified and its potential theft.
"With genetic testing, you always have to find out the results. You need counseling. You deprive the child of genetic privacy forever," said Twila Brase, president and co-founder of the Citizens' Council for Health Freedom. "The only person who should sequence a person is the person."
Policies vary by state...
Whereas some states allow parents to opt-in for testing, others have an opt-out approach. Critics argue parents have little to no say in whether this data is collected, where and how long it's stored, and what organizations do with this information. Lower genome testing costs sparked debate about researchers' right to use this information; who should learn of infants' chronic conditions and when; and the type of data government, researchers, payers, or healthcare providers can cull. Other concerns surround the storage and transmission of data that's not de-identified and its potential theft.
"With genetic testing, you always have to find out the results. You need counseling. You deprive the child of genetic privacy forever," said Twila Brase, president and co-founder of the Citizens' Council for Health Freedom. "The only person who should sequence a person is the person."
Policies vary by state...