Indiana health officials are storing the blood and DNA of almost every child born in the state in the last 23 years without parental consent.
WTHR reports that the blood, stored on cards in a warehouse in an undisclosed location in Indianapolis, is collected at birth to screen babies for more than 50 disorders. Several drops of blood are taken from the child’s heel (unless parents voice a religious objection) and sent to the Newborn Screening Lab in Indianapolis for testing.
These tests help diagnose more than 200 children annually with serious disorders that could cause serious health problems, according to the WTHR report.
After the tests are completed, the cards - between 2.25 million and 2.5 million of them - are being stored for possible medical research in 666 boxes in the warehouse.
"In medical research, you do need to get formal permission. You need to tell someone what you are planning to do. That was not happening," Dr. Eric Meslin, director of the IU School of Medicine's Center for Bioethics, told WTHR. Even though the samples have not been used for research, collecting blood for one purpose and then warehousing it for another is not good public policy, he said.
The state changed its policy last year and now asks parents for their permission to store a child’s blood for possible research purposes. Without permission, the blood sample will be destroyed in six months.
However, this change only applies to children born in the last year.
The samples stored at the warehouse, which does not have climate and humidity may not even be viable for testing anymore, officials told WTHR.
The department of health is now asking parents what they would like to see done with their child’s blood sample.
Parents can find the forms on the ISDH website. One allows parents to request that their child’s blood sample be destroyed and the other gives consent to have the sample stored and used for research.