INDIANAPOLIS (AP) -
The state of Indiana has been storing blood samples taken from newborns for
health screenings for more than two decades to save for possible use in
medical research without the consent of their parents, an Indiana Department
of Health Department official says.
director of the department’s Genomics & Newborn Screening Program, told WTHR-TV
that the state collected blood samples of more than 2.25 million children
born in Indiana since 1991 without telling the parents until it began asking
permission in June 2013.
“That’s why we are
struggling right now to try to figure out what is the best and most
appropriate thing to do,” he said.
Parents say they
don’t understand why they weren’t informed or asked permission. Sidney
Blake, whose three young children were born in Indiana, said he is troubled
by the practice.
“As a parent, if
something is going to be done with my child’s blood, I definitely would like
to know that,” Blake said. “I just think it’s the type of thing you should
disclose up front.”
Indiana, like most
other states, conducts newborn screening tests on every baby born in the
state. A few blood droplets are taken from each newborn’s heel and collected
on cards that are sent to a laboratory to be tested for more than 40 medical
disorders that could be dangerous or deadly if not detected early. Parents
and physicians are then notified.
“It’s really to
prevent bad outcomes for these children so they can reach their full
potential,” Bowman said.
But the health
department didn’t inform parents that the samples were being retained for
possible use in medical research in a large warehouse in Indianapolis.
Dr. Eric Meslin,
director of Indiana University School of Medicine’s Center for Bioethics,
said the state should have sought the permission.
research, you do need to get formal permission. You need to tell someone
what you are planning to do,” he said.
He said even though
the samples have not been used for research, collecting blood for one
purpose and warehousing it for another is not good public policy.
“I think it’s very
legitimate for people to be concerned and wonder ‘What happened?’” he said.
spokesman Ken Severson told The Associated Press Indiana that law requires
the agency to develop a system for using the dried blood spot cards for
epidemiological survey and research purposes, but in a manner that does not
identify the individual to whom the specimen belongs.
Indiana changed its
policy last year and began asking parents whether they would allow their
newborn baby’s blood to be used for research. If they say no, the samples
are destroyed after six months, lab director Barb Lesko said.
The state Health
Department and the screening lab say the stored samples will not be released
for research without permission. Bowman said he’s not even sure the samples
could be used for research because they have been kept in a warehouse with
no temperature or humidity controls.
Bowman said he
doesn’t know why the state is continuing to keep the samples.
something we’re struggling with,” Bowman said. “It is a complex issue.”
Meslin believes the
state’s dried blood could prove valuable for future studies.
“We have the
ability to learn more and more from little bits of blood and biopsy
material. If we throw all that away, it means any scientific value is lost -
lost forever. That’s not in the public interest,” he said.
department has posted forms on its Web site at