If you were born at a hospital in Michigan after 1984, your blood is probably stored in Detroit and used for research. But most Michigan-born residents don’t know this.

Since 1984, blood samples of nearly every baby born in Michigan were collected and saved and now sit in Wayne State University’s Tech Town warehouse in Detroit as part of the Neonatal BioTrust. In 2009, lawmakers decided to allow the 4 million-plus samples to be used in research without requiring consent from individuals.

Life Sciences and Society, a program in the University’s School of Public Health, held a town hall meeting last week to inform students and Michigan residents about the bank and to help them make a decision about the future of their blood. The town hall meeting was one of several that have taken place throughout the state during the year.

Sharon Kardia, director of LSS and chair of the Department of Epidemiology in the School of Public Health, one of the leaders of the town hall meetings, said many people are surprised to find out about the blood bank.

“(They) had no idea that their blood spots or their kids’ blood spots were in this biobank,” Kardia said. “The next piece after the surprise is usually (a kind) of concern: ‘Well what else do they have, why wasn’t I told and when are they going to ask?’”

It is estimated that 20,000 University students have their blood in the BioTrust, according to an LSS press release. The program seeks to inform students that they can sign a consent document or ask that their blood not be used.

Kardia said researchers want the public to give consent and use samples from people who give consent so that good relationships are maintained between the research and public communities.

“Consent is such a fundamental part of good research practice,” Kardia said. “People should know when they’re being a part of research.”

LSS Assistant Director Daniel Thiel said students should be aware of the option to give their blood for research, especially because it is not a widely discussed issue. LSS’s mission is to promote education, research and community engagement in areas related to the life sciences. A part of that mission is to educate the public about what people can do with their blood samples.

“We’re concerned about the way that the public perceives the way that science moves forward, and we’re also concerned about making sure that science is done in an ethical manner,” Thiel said. “We’re interested in educating the public about it and also looking and testing new ways to think about what consent means for a large biobank like this.”

The blood is initially collected for the newborn screening test, which is a test required by the state that screens for 49 disorders that would require early treatment. Because the test is required by state law, no parental consent is necessary. According to the Michigan Department of Community Health, the newborn screening test finds more than 200 babies born in Michigan each year have one of the listed disorders.

When the blood is collected from newborns, leftover dime-sized samples are placed on paper cards, which are then stored in the BioTrust. When the samples are moved to the bank, they are unidentified so that no personal information is attached to them.

At town hall meetings and other discussions LSS has held, Thiel said people ask many questions to understand the logistics of the program and why researchers are asking permission to use the blood now when it isn’t required for the newborn screening test.

“One of the big things that we’ve seen is confusion between the newborn screening program and the BioTrust research which is really separate,” Thiel said. “(The research is) after the newborn screening is over.”

In 2010, LSS received a five-year National Institutes of Health grant that it plans to use to lead discussions to see what the public thinks about the ethics involved with the BioTrust.

Kardia has been doing genetic research and said the BioTrust blood is a valuable resource.

“I think it’s a really unique opportunity because there’s no other resource in the United States that actually has every single person in a state-born in that state-curated for potential research,” Kardia said. “Everything else is biased by the way we sample it when we do the research.”

However, even though no consent is required for the blood to be used, Kardia said it is important for the researchers to ask. As a researcher, Kardia could use the blood to further her studies, but as a mother, she said she understands why consent is important.

“I’m a geneticist, and genetic information is awfully personal,” Kardia said. “I don’t want to do genetic studies on people who don’t know I’m doing those genetic studies.”

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