Heel Prick Test

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Did you know that the blood sample taken from a newborn’s heel prick test is used for research?

Did you know that in Victoria the blood sample from a newborn’s heel prick test is stored indefinitely?

Did you know that that same blood sample has being subpoenaed by courts as evidence?

What is the heel prick test?

The heel prick test is undertaken on a baby when it is between 48 and 72 hours old.  A doctor, or midwife, must seek a parent’s consent before the test is done.  This test has been undertaken since 1970 in Australia. 

The procedure requires a few drops of blood being collected from the baby’s heel on special filter paper.  The filter paper is left to dry then sent to a screening laboratory where the sample is tested for different conditions.

This card that contains the baby’s information is called the Guthrie card.

Guthrie Card

Why do the heel prick test?

The heel prick test is done to detect rare genetic disorders.  In Australia, the test screens newborn babies for disorders such as cystic fibrosis.  It is also sometimes used to detect more than 30 extremely rare disorders related to how the body breaks down protein and fat.

When the test results show that the baby has a birth defect, early diagnosis and treatment can make the difference between lifelong disabilities and healthy development.

A young girl with cystic fibrosis

However, this test has faced several legal challenges.

Legal Challenge #1

The American Flag

Texas, like every other state in America, pricks the heels of newborn children for a blood sample.  Over time, these cards began to accumulate and the Texas State Department of Health Services began to share them and use them for research in order to benefit public health.  It is important to note that the Guthrie cards were de-identified.

As a result of these actions, the department was sued because it failed to obtain consent from each parent for the release of their (nameless) child’s blood spot.

The case promptly settled.  The state agreed to destroy millions of cards and to give parents clearer procedures to opt out of the storage of the cards.

Unfortunately, this was not where the case finally stayed.  The state had also concealed its involvement in a law enforcement project.  The Texan doctors had also handed over hundreds of Guthrie cards to the federal government to help build a vast DNA database – a forensic tool designed to identify missing persons and crack cold cases.  This database would be shared worldwide with one common theme – homeland security and anti-terrorism. 

DNA

The way that this works is that everyone in the same maternal line shares the same DNA sequence.  However, a match from a crime scene sample to a profile from a Guthrie card would have little impact.  This is because the cards are nameless.  But there is no doubt that the federal government wanted to build such a database in order to improve the interpretation of such data for evidence and other sources.   

Outcome: this legal challenge led to the destruction of 5.2 million Guthrie cards due to the lack of parental consent.

Legal Challenge #2

The Australian Flag

In 1997 in Western Australia police wanted to gain access to DNA to prove a man was the father to his own grandchildren.  No one in the family would consent to this request because they lived in fear of the man.  The police were therefore able to obtain DNA samples from the Guthrie cards and successfully prosecute the father with incest.

Outcome: this challenge led to Western Australian hospitals upholding a policy of keeping the cards for only two years before destroying them.

Legal Challenge #3

The New Zealand Flag

In New Zealand in 1999 there was an action for a paternity test.  A man asked the High Court to have his child’s blood sample released for DNA analysis after the baby’s death.  The mother claimed that releasing the sample would be unlawful since it would be used for a purpose other than its original purpose.  She also claimed that she had not been informed that a blood sample for Guthrie test analysis had been taken from her child and that she had never consented for this sample to be obtained.

Outcome: the High Court granted the man access to the card and it was ultimately proven that he was the biological father of the baby.

Discussion

The heel prick test and the use of the information stored on this card raise some very important questions.  

Here is a selection of questions open for discussion:

1.              Should parents decide who has access to their baby’s DNA?

2.              Do the Guthrie cards provide a valuable public health service?

3.              Should consent to this procedure be taken during pregnancy?

4.              Do we need a consistent national law to regulate this procedure?

5.              Or, could changes lead to parents not consenting to the Guthrie card procedure?