Sickle cell carrier

A person can be a carrier of the gene for sickle cell anemia without being sick. Carriers do not have a higher risk of developing the disease than other people. However, the gene for the disease can be passed on. For information about the chances of passing on the gene for the disease or of having a child with the disease, go to the page Recessive hereditary disease transmission.

Blood tests can be done at any age to find out if you carry the gene for sickle cell anemia. Finding out your carrier status might allow you to plan future pregnancies, especially if you know that your partner also carries the gene.

Adults often want to know if they carry the gene for sickle cell anemia when they discover that their child is a carrier.

Finding out your child’s carrier status

A baby’s carrier status can be determined during newborn blood screening. The Québec Neonatal Blood and Urine Screening Program, which is offered to babies born throughout Québec, can detect various diseases, including sickle cell anemia, and determine whether or not the baby is a carrier of the gene.

The carrier status result is only sent if it is requested. It may be requested any time, since the information is stored long term in a confidential manner.

Some parents believe the information is useful, but prefer to wait to request the result and avoid needless stress. Some people say that they tended to see their child as more vulnerable when they knew the child was a carrier, even if the child’s risk of being sick was not any higher than for other people. Other parents prefer to wait until their child is old enough to decide if they want to ask for their result. The child may do so when they turn 14.

For a child, knowing their carrier status will only be useful when they decide to have children. When they are old enough to start their own family, the information will allow them to make fully informed choices.

Procedure to obtain the result

If your child was tested under the Québec Neonatal Blood and Urine Screening Program, you can find out their sickle cell carrier status result by contacting their doctor or by following these steps:

  1. complete and sign the Sickle Cell Anemia Gene Carrier Status Request This hyperlink will open in a new window. form;
  2. acheminer le formulaire, soit :
    • by mail:
      Programme québécois de dépistage néonatal sanguin
      CHU de Québec – Université Laval
      10, rue de l'Espinay, local A2-115
      Québec (Québec)  G1L 3L5
    • by fax: 418 525-4595
    • by email: depistage.neonatal@chudequebec.ca
  3. after around two months, you will receive a letter with the result (the letter also contains general information about what it means to be a carrier of the gene for sickle cell anemia).

If you find out that your child carries the gene, it may mean that other family members (brothers, sisters, uncles, aunts, cousins) could be carriers too.

If your child did not have a screening test under the Québec Neonatal Blood and Urine Screening Program and you are wondering about their sickle cell carrier status, blood tests can be done at any age.

Advantages and disadvantages of finding out your child’s carrier status

The advantages of knowing your child’s carrier status are summarized below:

  • you will be able to tell your child when the time comes;
  • you will have an idea of your own carrier status;
  • you will be able to submit a request to find out the carrier status of other family members.

The disadvantages of knowing your child’s carrier status are summarized below:

  • you may worry needlessly about their health;
  • you may be mistaken about your own carrier status (you might be a carrier of the gene even if your child is not);
  • it might indirectly reveal that the father is not the biological father (both parents of a child who is a carrier will necessarily be carriers).