What is the Michigan Neonatal Biobank?
The Michigan Neonatal Biobank (“the Biobank”), a non-profit organization, is a repository for the Michigan Department of Community Health’s archive of dry blood spots. The Biobank is collaboration among the Michigan Department of Community Health, Wayne State University, Michigan State University, the University of Michigan and the Van Andel Research Institute to support the Department of Community Health in their efforts to develop their dried blood spot archive into a unique resource for research.
What are Dried Blood Spots?
Beginning in 1965, as part of the State’s mandatory Newborn Screening Program, hospitals collect spots of blood on a filter card from nearly all Michigan newborns. The spots are allowed to dry, and then the filter cards are sent to the Michigan Department of Community Health for tests to detect any of 49 disorders that could have a serious impact on a child’s health. Five spots are usually collected to be sure there is enough blood for all of the tests. Since the spots are dry they are referred to as Dried Blood Spots (DBS).
How does the Michigan Neonatal Biobank get the Dried Blood Spots filter cards?
Normally there are residual (unused) blood spots on the filter card after the Newborn Screening tests are completed. The Michigan Department of Community Health keeps one of the spots in case it is needed in the future. The filter card containing any remaining blood is then stripped of its identifying information and assigned a code. Finally the coded card is forwarded to the Biobank for appropriate storage and management.
What does the Michigan Neonatal Biobank do with the Dried Blood Spots filter cards?
The cards are stored in archival quality boxes in a temperature and humidity controlled space to ensure their long term quality. The coded cards are made available for research programs that have been approved by the Michigan Department of Community Health.
Why use leftover Dried Blood Spots for research?
Studying Dried Blood Spots may lead to new screening tests. Research may also provide important clues about different factors that impact health or cause diseases not only in Michigan but worldwide. Because many Dried Blood Spot samples can be provided at one time, it is easier for researchers to study very large numbers of people from all over the state. This is simpler than trying to collect a new sample from each person. This can help speed up the chance of new discoveries, improve quality, and possibly reduce the cost of research.
How many of these filter cards does the Michigan Neonatal Biobank have?
Since 1965 Michigan Law has required the Michigan Department of Community Health to collect blood samples on filter cards from all Michigan newborns to screen for a variety of disorders. The Department of Community Health has retained these cards since 1984, subject to privacy stipulations. The Biobank includes more than four (4) million filter cards.
What is the value of having so many filter cards in the archive?
The most informative and accurate research studies are the result of very large, unbiased samplings. The State of Michigan is unique in having so many to offer.
What kind of research has been done, and would be allowed in the future?
So far, only a few research studies using Michigan Dried Blood Spots have been conducted. Examples include: (1) studying the incidence of different gene variants for an inherited condition (hereditary hemochromatosis); (2) developing additional laboratory screening methods (sickle cell diseases); and (3) searching for new disease markers ( childhood leukemia). In the future, the only studies that will be allowed are for medical or public health research conducted in accordance with guidelines established by a Community Values Advisory Board.
Are Dried Blood Spots used for cloning or stem cell research?
No. Dried blood spots cannot be used for either cloning or stem cell research.
What about my privacy?
In the year 2000 the Michigan Legislature amended the public health code to “…allow the blood specimens to be used for medical research…as long as the medical research is conducted in a manner that preserves the confidentiality of the test subjects and is consistent to protect human subjects from research risks.” Researchers who have received approval from their Institutional Review Board may request samples from the Biobank for their research. The Department of Community Health’s Institutional Review Board must also approve the use of the samples.
All samples are assigned a barcode number when they are received at the Michigan Department of Community Health for Newborn Screening. That barcode number, but not identifying information about the baby, is sent to the Biobank with the sample. Before a sample is released for research the Biobank assigns a new barcode number. This "double de-identification" process ensures that information about the sample remains private.