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Hundreds Of Parents Take Action On Newborn DNA Samples
Updated August 28, 2014 1:33 PM
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(INDIANAPOLIS) - Hundreds of Indiana parents are telling the state to destroy blood samples the state has been storing from their child's newborn screening test.

In July, 13 Investigates discovered the Indiana State Department of Health was keeping blood samples from more than 2.25 million Hoosier children without permission. The health department asked parents to contact the agency and specify how they wanted their child's sample handled.

In less than two months, the health department reports it has received 354 formal requests. Nearly 94 percent - or 333 - requests instruct the state to destroy the blood samples. Another 21 parents gave the state permission to keep and to use the stored sample for future research.

The blood samples include the screening card for nearly every child born in Indiana since 1991. They are stored in rows and rows of boxes in a state warehouse.

Indiana, like most other states, conducts a newborn screening test on every baby born within its borders. As required by state law, a nurse or midwife takes a few drops of blood from the heel of each newborn. (There is a limited exemption for families citing religious objections.)

The blood is collected on a special card and sent to the state's Newborn Screening Lab in downtown Indianapolis. That's where researchers quickly test the blood to look for more than 50 medical disorders that could be dangerous - and even deadly - if not detected early. Parents and physicians are notified of the results.

Each year, it identifies about 200 children who have serious metabolic, genetic or endocrine conditions. Newborn screenings help detect genetic heart defects in another 45 Indiana babies annually, and newborn hearing loss is identified in about 200 more babies.

For decades, the state kept leftover blood samples for possible use in medical research, but the department never asked parents' permission do that. The state acknowledges the problem and says the samples have never been used for research.

"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.

Earlier this summer, Bob Bowman, director of ISDH's Genomics & Newborn Screening Program, told 13 Investigates, "It's something we're struggling with. It is a complex issue we are struggling with right now to try to figure out what is the best and most appropriate thing to do."

He also explained the Department of Health changed its policies with newborn screening tests last year. Parents are now asked up front whether they will allow their newborn baby's blood to be used for research. And if they say no, their child's blood sample is no longer kept for decades.

"Those are stored in the lab for six months, after which time we destroy them," said lab director Barb Lesko.

In response to our investigation, the state health department agreed to let parents decide what happens to their child's blood sample.

So far, the agency says it's received 354 formal requests from parents. 333 of those requests instruct the state to destroy blood samples currently on file. The other 21 give the state permission to keep and use a stored blood sample for future research. That's an overwhelming 94% of responding parents who want their kids' blood pulled out of these boxes and destroyed by the state health department.

Health officials say they will comply with all of the requests, and they will notify parents by mail when a specific blood sample is destroyed.

ISDH has created new consent forms that parents can now obtain online. There are two separate forms: one that allows parents to request a blood sample be destroyed and another that gives parental consent for a blood sample to be stored and used for research. They are available now on a redesigned ISDH website.

Parents who have children born in Indiana between 1991 and 2013 are encouraged to download the forms and send them to the state.

If you would like a newborn screening notification form, go to http://www.in.gov/isdh/20215.htm

If you want the state health department to mail you a form, you can call or e-mail ISDH at the contact information listed below:

Genomics and Newborn Screening Program
Division of Maternal and Child Health
Indiana State Department of Health
Attn: Holly Heindselman
2N Meridian St., 2E
Indianapolis, IN 46204
Website: www.nbs.in.gov
Phone: 1.888.815.0006
Email: ISDHNBS@ISDH.IN.GOV



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