TALLAHASSEE, FL-- Almost every parent agrees to genetic testing for their newborn. Some of those test results are kept by the state Department of Health.
The DNA of babies with some genetic disorders are also kept on file, often without the parents' knowledge.
Right now the DNA and blood samples are meant to be kept indefinitely. Dr. Joseph Chiaro says the Florida Department of Health is rethinking the timetable.
“We’re currently looking gat the question of how long we should keep these specimens and we will probably decide that 5,6,7 years is plenty adequate,” Dt. Chiaro said.
The samples are identified by bar codes with the indentifying information stored separately.
Storing the information is raising concerns about privacy, because other states with similar databases have reportedly shared information with researchers.
Dr. Chiaro says Florida isn’t one of them.
“We have a policy that we don’t share or sell any information like that. We’ve never shared it with any insurance company. The only one that the info is shared with is the physician who is listed as the baby’s doctors,” Dr. Chiaro said.
The Department Health says keeping the information allows doctors to know what diseases to test kids for as they get older. It also allows the state to see if their methods of testing are improving.
Some parents said they were upset that the state was storing the information without their knowledge.
