For over 20 years, the state of Indiana hoarded the blood of newborns without their parents' consent. If your child was born in Indiana after 1991, chances are his or her blood sample is one of an estimated 2.5-million specimens currently stored in a warehouse, the location of which state officials have not disclosed.
Above: Infant blood samples dating as far back as 1991 line the shelves of an Indianapolis warehouse. According to state officials, older specimens have been stored in cardboard boxes in spaces that are not temperature or humidity controlled. The state tells Indiana news station WTHR this "could be a significant problem." | Photo Credit: Indiana State Department of Health
Like most states, Indiana's State Department of Health screens its infants for serious genetic, metabolic, and endocrine conditions that might otherwise be overlooked, and could require immediate medical attention. The process requires a small sample of blood be collected from every newborn and analyzed at a centralized testing facility. Such screening programs are generally well-received, due to their clear benefit to public health. Indiana's Genomics & Newborn Screening Program, for example, helps identify close to 500 newborns every year with conditions that might otherwise go unnoticed and untreated.
But Indiana's program takes its blood-sampling procedures a step further. Since 1991, Indiana has been keeping its leftover samples – blood from an estimated 2.25- to 2.5- million babies – on hold, for use in future medical research. What's more, the state admits to doing so as recently as 2013 without receiving parental consent:
Via WTHR Indiana:
State health officials say its collection of dried blood and DNA is currently stored in 666 bankers boxes in a large warehouse in Indianapolis. ISDH agreed to provide 13 Investigates with a photo that shows rows of boxes stacked on shelves inside the warehouse, but it would not allow WTHR to visit the warehouse or say where the warehouse is located.
"Right now we have samples dating back to 1991, so there are approximately 2.25 to 2.5 million samples currently being held," said [director of ISDH's Genomics & Newborn Screening Program Bob] Bowman. "We do have a lot."
Because the boxes contain blood sample cards for almost all children born in Indiana over the past 23 years, they contain the DNA of native Hoosiers who are toddlers, adolescents, teenagers – even recent college graduates.
According to Bowman, the blood samples have been detached from personal identifying information, which is maintained separately in a state computer database.
Health officials have been storing all of the leftover blood in case it is requested for medical research. ISDH has received several requests but, so far, has not agreed to release the blood samples, realizing it did not obtain proper consent to do so.
"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," said Dr. Eric Meslin, director of the IU School of Medicine's Center for Bioethics. Even though the samples have not been used for research, he says collecting blood for one purpose and then warehousing it for another is not good public policy.
A visit to the Indiana State Department of Health's website reveals the state has been seeking parental consent for its "Dried Blood Sample" (DBS) test as of June 2013:
If a parent/guardian chooses to have their child's DBS saved, it will be stored and made available for medical research purposes for a period of three years and then destroyed. Although saved DBS, as of June 2013, will be available for medical research, no identifiable information about your baby will ever be released. If a parent/guardian indicates they do not want a baby's DBS used for medical research, then the DBS is kept for 6 months to ensure additional screening is not necessary and then destroyed.
"If your baby was born before June 1, 2013," the site reads, "your baby's DBS has not been made available for medical research."
Indiana parents may request that their child's blood be destroyed, regardless of when their baby was born by completing this form. Parents can request their child's blood sample be stored and saved for research purposes by completing this form.
More info, including quotes from state officials and health experts, at WTHR.