After collecting blood spots for newborn screening, the dried blood spot (DBS) specimens are sent to a designated state laboratory for testing. These blood samples in state possession include newborns’ DNA. States have different laws governing parental rights to restrict DBS use.

In some states, parents may completely restrict DBS use and request its destruction. Other states allow DBS to be used for research without parental consent.

In another article, we examined laws governing newborn screening and parents’ ability to opt out. Knowing how states may use DBS and test results could help parents weigh the benefits of state newborn screening against the detriments of government access to newborns’ DNA.

Generally, DBS and test results are health records subject to federal privacy laws. Most states allow specimens and test results to be released to the health professional who submitted the samples, the newborn’s primary health care provider, the parents, and a court (with a court order). This research does not cover these baseline issues.

A few states such as Indiana, Michigan, and Texas have been subjected to class action lawsuits for their use of DBS samples. This has resulted in thousands of records being destroyed or a change in policy depending on when a blood sample was collected. This article does not review policies governing retention of past specimens, but focuses on the current law that applies to new samples.

Our state overview focuses on a few specific areas of newborn screening retention policies, including:

• Whether DBS and test results are used for research

• Whether parental consent is required or allowed for research

• How long DBS samples are stored for

• Whether DBS samples are destroyed

• Whether parents may request DBS destruction

Specimens and test results are usually considered “confidential,” but that often means they can still be released anonymously for statistical reasons (such as a report that X amount of newborns had identified defects because of screening this year). Several states do not have either a law or a regulation, but a retention policy may be found on the health department or equivalent agency’s website.

Heritage Defense supports your parental rights in making medical decisions for your children. Knowing your parental rights regarding state use of your newborn’s blood specimens and screening data helps you make more informed decisions.