Blood spot cards are used to benefit babies and children in BC even after the newborn screening tests are complete. This page provides information on the use and storage of blood spot cards. It also provides information for the parent(s) and/or legal guardian(s) who may not want their baby’s blood spot card to be used for these purposes.
A baby’s heel is pricked, and a few drops of blood are taken and put onto special filter paper. The filter paper is attached to a larger card called a blood spot card. When the blood samples are dried, the card is sent to the newborn screening laboratory at BC Children’s Hospital for testing.
The tests help to find babies who may have one of a number of rare and serious disorders. When these disorders are found and treated early, the chances of serious health problems are prevented or reduced later in life. If not treated, these disorders can cause severe mental handicap, growth problems, health problems, and sudden infant death.
After the tests are done, a very small amount of dried blood is left on the card. The amount left depends on how much blood was collected and whether more tests were needed to make sure the results were accurate. The amount left is usually smaller than a dime.
Newborn Screening BC stores the cards with the leftover blood sample for 10 years. This is consistent with the period of time in which the card has any potential clinical use. Cards are stored in one of two secure locations: BC Children’s Hospital laboratory storage or off-site storage.
Blood spot cards may only be requested from storage by the Medical Director and senior staff of Newborn Screening BC. All staff that access stored cards have received training in data privacy.
Blood spot cards are kept for clinical purposes such as:
- Re-running a test if the first test result was not clear. This means the test can be repeated without having to get another blood sample from the baby.
- Trying to find the reason for a health problem that has developed later in a child’s life or trying to find the cause of an unexplained illness or death of a child. Sometimes testing the leftover blood spot sample will help to find the cause. In these cases, testing would only be done with the consent of the parent(s) or legal representative(s).
- Checking the quality of testing done by the laboratory to make sure that results are accurate.
- Developing better tests for the disorders currently screened or for developing new tests to screen for other treatable disorders.
Yes, a few studies have been conducted on stored blood spots. In all cases, stored blood spot samples were anonymized meaning that all the information that identifies the baby (e.g., name, personal health number, and date of birth) was removed to protect privacy in accordance with the BC Freedom of Information and Protection of Privacy Act (FIPPA). All research projects have been approved by a Clinical Research Ethics Board to ensure high ethical standards.
There is great potential to advance science and clinical care for newborns and children utilizing stored blood spots for health research. Public health research contributes to the public good through increased scientific knowledge.
Blood spot cards are treated the same as hospital records or medical files held by doctors and hospitals in relation to the powers of the Court. On rare occasions the Court or other legislative authority (e.g., Coroner’s Act) may order access to a blood spot card or related information. Without legislated authority, blood spot cards are not released to third parties.
Yes. Parent(s)/legal guardian(s) who do not wish their baby’s blood spot card to be stored with Newborn Screening BC may have the card destroyed.
Parents/legal guardians who wish to have their baby’s blood spot card destroyed must sign a form called a Directive to Destroy Leftover Newborn Screening Blood Samples. The signed form is sent to the BC Children’s Laboratory with proof of identity.
Once a directive to destroy a card is received, the NBS laboratory separates the filter paper containing the blood spots from the blood spot card. The filter paper and blood spots are destroyed. A letter is sent to the parent(s)/ legal guardian(s) to tell them the blood spots have been destroyed. Destroying the card means that the card will no longer be available for any purpose, including further tests if the baby or child develops an illness later in life.
Both parent(s)/legal guardian(s) must sign the request to return or destroy their baby’s card. If the baby has only one parent/legal guardian, that parent/legal guardian must sign the form to say they are the only parent/legal guardian.
Occasionally, parent(s)/legal guardian(s) may request to have their baby’s blood spot card returned. This would require completion of the Release of Leftover Newborn Screening Card form. The signed form needs to be returned to the Newborn Screening Lab (either via fax or mail). The Lab will retrieve the card from storage and contact the parent(s)/legal guardian(s) when it is ready for pick up. Parent(s)/legal guardian(s) must come to the BC Children’s Laboratory with proof of identity to pick up the blood spot card. Returning the card means that the card will no longer be available to the Newborn Screening laboratory for any purpose, including further tests if the baby or child develops an illness later in life.