The state health department’s BioTrust for Health makes a collection of blood samples-stored in the Michigan Neonatal Biobank-available for research.
This is an initiative of the Michigan Department of Health and Human Services (MDHHS), the department of state government responsible for services promoting health, access to care and disease prevention.
The Biobank includes “bloodspots” collected from everyone born in Michigan between July 1, 1984 and April 30, 2010: more than 4 million in all.
Since then, more bloodspots have been added, but only when parents have signed permission forms. Before May 2010, there was no method in place to get consent.
If you’re under 30 and born in Michigan, then you are one of the 4 million people in your generation who are in the Biobank. Your bloodspots can be used, with names removed, for health research.
(Rare exceptions incude people whose parents refused newborn screening, or people who have opted out of the research pool.)
How did my blood get into the Biobank?
When you were a tiny baby, less than 3 days old, your heel was pricked and several splotches of your blood were transferred onto an absorbent paper card.
(Scientists call these splotches “dried bloodspots,” or DBS.)
In every state in the country, these heel-pricks are done for routine tests that check ALL babies for rare disorders. These tests save babies’ lives.
In some states, the bloodspots left over when these tests are done get carefully thrown away. Michigan is special because the state has kept leftover bloodspot cards in storage since 1984.
One of your dried bloodspots is stored by the state lab in case you or your parents need to access it. The remaining bloodspots are made available for health research.
More than 4 million bloodspot cards are now stored in the Michigan Neonatal Biobank in Detroit.
What can be done with my blood?
Michigan’s dried bloodspots are a huge treasure for researchers because the spots might hold the answers to major health questions. What are the causes of autism, or childhood cancer? Is something in the environment making people sick in the town you live in?
The bloodspots could help answer questions like these because the collection is big, it represents the entire population of Michigan, and it speeds up scientific discovery: Instead of having to find volunteers to give them blood every time they do a study, researchers can request blood already available in the Biobank.
The bloodspots can be linked to large health department databases so that researchers can access particular sets of bloodspots, sorted into categories like county, birth year, or disease.
In recent years, the bloodspots in the BioTrust have been used to study a variety of health questions, from a study of mercury levels in newborns in the Great Lakes region to childhood exposure to tobacco.
The Michigan Department of Health and Human Services provides a full listing of current and past research projects that have used the bloodspots.
What about my privacy?
By law, the Michigan Department of Health and Human Services must keep your personal information private.
Before the bloodspot cards were stored in the Michigan Biobank, they were marked with a bar code similar to the kind used on groceries. Information that could identify you, like your name or address, was removed. Before releasing bloodspots to researchers, the Biobank replaces each bar code with yet another numeric code. This way, researchers can’t link a bloodspot to a specific person. They have been “double de-identified.”
Also, before scientists can use your bloodspots for health research, they write proposals that have to be approved by an ethics review board. If the board thinks the study is so particular that you might be identified, the researchers will be required to get your permission to access your bloodspots.
What about asking my permission?
When bloodspots were collected between July 1, 1984 and April 30, 2010, there was no system in place to ask permission to use them for research.
Because it would be impractical for the BioTrust to go back and ask permission from all of Michigan’s 4 million, they were given a legal waiver that allows these bloodspots to be used for approved research.
All left-over dried blood spot samples are stored indefinitely once newborn screening is completed in the event a parent or child needs to use the dried blood spot sample in the future.
As of May 2010, parents must sign a permission form before bloodspots are added to the BioTrust research pool.
You (or your parents) do have the right to opt out of the BioTrust. You may want to remain a part of it. But parents and individuals 18 or older can withdraw samples from the research pool. You can learn more about your bloodspots and your options from the Michigan Department of Health and Human Services.
Should I be a part of this?
Only you can decide, but we can point out some of the risks and benefits of having your blood in the Biobank.
The biggest benefit is that your blood sample may help researchers to find new ways of diagnosing, preventing and treating disease. This could improve people’s lives, possibly your own.
You will not receive results from tests that are conducted on your blood. You will not be rewarded for keeping your blood in the Biobank, or for withdrawing.
Although steps are taken to protect your privacy, there remains a very small risk that someone could identify your health information.
There are laws in place that prevent insurance companies or employers from using health information stored in the bloodspots to determine your coverage or discriminate against you. In case you’re wondering, it is not possible to do embryonic stem cell research or human cloning using the Biobank samples.
If you still have questions or concerns, or want instructions about how to opt out, call MDHHS: 1-866-673-9939.