How is directly identifiable information removed from the samples?
All samples are double blinded. This means that after newborn screening is completed, the filter paper containing leftover blood spots is separated from the NBS card that has the baby’s directly identifiable information. A code is assigned to the remaining blood spot sample before it is transferred to the Michigan Neonatal Biobank for storage. Then, before that same sample is released to a researcher, the Biobank assigns another, different tracking number. Therefore, the tracking number the researcher sees is two steps removed from the original NBS case number. If a research project requires samples meeting certain criteria, such as a certain geographic region, sex, or condition, MDCH will conduct a database linkage to select the right samples while still keeping them confidential.
All samples are double blinded. This means that after newborn screening is completed, the filter paper containing leftover blood spots is separated from the NBS card that has the baby’s directly identifiable information. A code is assigned to the remaining blood spot sample before it is transferred to the Michigan Neonatal Biobank for storage. Then, before that same sample is released to a researcher, the Biobank assigns another, different code. Therefore, the code the researcher sees is two steps removed from the original NBS case number. If a research project requires samples meeting certain criteria, such as a certain geographic region, sex, or condition, MDCH will conduct a database linkage to select the right samples while still keeping them confidential and double blinded.
