Evidence Library · Newborn procedures

The newborn blood spot, and what happens to the sample

The test is uncontroversial. The storage is not.

A few drops of blood from your baby's heel are tested for a panel of rare but treatable conditions. Finding one of these early genuinely changes a child's life, and this is among the most valuable public health programmes there is.

The number of conditions is not fixed. Sources currently give the recommended US panel as somewhere between 34 and 40 core conditions plus 26 secondary ones, and it has been changing. This tool will not give you a single number, because there is not a settled one.

What is less well known is what happens to the sample afterward. States retain residual blood spots for periods ranging from about a month to indefinitely, and many use them for research, quality assurance or other purposes without a separate consent. In Texas, litigation in 2009 led to an agreement to destroy an estimated 5.3 million stored samples, after it emerged that spots had been transferred to a federal identification database without parental knowledge.

Two separate questions"Do I consent to the screening test?" is one question, and the answer for almost everyone should be yes. "Do I consent to my baby's sample being stored and used afterward?" is a different question, with a different answer in different states. Ask what your state does and whether you can opt out of storage.

Where this comes from:

246. Cunningham S, O'Doherty KC, Sénécal K, Secko D, Avard D. Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities. J Community Genet. 2015;6(2):117-128.

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More from After the birth

This page is educational. It supports the conversation with your own clinicians. It is not consent to any treatment, and it cannot assess you. If you are worried about a symptom now, see urgent warning signs.