Updates from Donor Banks - support

We were pleased to contribute to the Donor Conception Network Perspective magazine to provide an article titled - Health updates from donor banks: What they mean and what to do if you receive one. 

 

We often are asked to support people who are faced with these updates, either directly or by their clinics and have shared the article below. Please do get in touch if you would like talk to us about any of the points raised. 

 

If you have used donor sperm or donor eggs to build your family, you may receive a health update from your fertility clinic or donor bank at some point in the future. These updates are typically shared directly with you and alert you to new medical information about the donor or about a child conceived using the same donor. However, receiving this kind of notice can be unexpected and often distressing. It may raise questions about a child’s health or future family plans. These updates typically happen because: 

 

• A donor has reported a new medical diagnosis since their initial screening. 

• A donor-conceived child is being investigated for a condition that may be hereditary 

• A donor-conceived child has a confirmed genetic condition, and the gene change has been identified in the donor, which means there is an inherited risk. 

 

This information is sent for your awareness. For example, a donor has recently been diagnosed with type 2 diabetes, a common condition caused by a combination of genes working together and environmental influences. This is not a cause for concern but may be helpful to know that there may be a predisposition in adulthood. 

 

Sometimes this may indicate a risk for a child. Your clinic will be able to refer you for suitable medical support and an accurate risk assessment, pending further information from the donor bank regarding their investigations. 

 

Sometimes a donor may be found to be at risk for an adult-onset condition, such as hereditary cancer, or a carrier for a condition where the genetic change does not result in symptoms for all people. In this instance, you would be referred to specialist genetic services for an accurate risk assessment with support and guidance. 

 

Typically, the process involves two stages: 

 

Initial notification: 

This is sent during the early stages of an investigation. The clinic or donor bank may not yet know whether the reported condition is linked to the donor, but they are required to tell you that investigations are ongoing. This is about raising awareness. 

 

Follow-up notification: 

Once more information is available, a second update may clarify the findings, for example: 

 

• The condition is not linked to the donor, and no further action is needed. 

• The condition is potentially linked, but the risk is uncertain or low, often due to multifactorial causes (a mix of genetic and environmental factors). 

• The condition is linked to the donor, but a child may not necessarily develop symptoms, so a child may benefit from a medical check-up. 

• The condition is confirmed to have an inheritance risk, and you will require guidance from specialist genetic services to understand the risk, testing and support options. 

 

Every health update is different, and not all will require action. Some updates are shared for your information only. In other cases, there may be medical or genetic implications. Receiving an update could have: 

 

• No impact: The update is informational, and no concern has been identified. 

• Uncertain or low risk: Some conditions involve complex genetics or multiple contributing factors. These cases may not lead to a specific diagnosis or health difficulties. 

• Medical relevance: A condition may pose a potential health risk for a child. It may be advisable to monitor for specific signs or symptoms, even if none are currently present, and to seek medical advice if you are unsure. 

• Adult-onset conditions: Some genetic conditions present in later in childhood or adulthood, in which case long-term awareness and monitoring may be advised. 

• Reproductive implications: A genetic change if inherited from a donor may impact a donor conceived person when planning a family in the future. 

 

If you receive a health update, it is important to read it carefully, as it will usually include whether the update is for information only or if action is advised. If action is advised, contact your Clinic or GP to help interpret the information, recommend any assessments, and provide support. 

 

You may be referred to speak with a genetic counsellor. If a medical check-up or specific screening is suggested, you will be advised to follow through with your healthcare provider. 

 

When a health update is received, the donor may be placed on ‘hold’ by the donor bank, meaning no further use of their sperm or eggs (gametes) is permitted until full investigations are complete. If you have stored embryos or gametes from the same donor and were planning further treatment, you will need to review your options with your clinic. Usually, following a notification, you may be asked to sign a specific consent form confirming that you understand the new information and before proceeding with treatment. 

 

In some cases, if the risk is significant, the donor may be permanently withdrawn from use, and future treatments using the gametes may not be permitted, even with consent. 

 

Health updates like these can be emotionally challenging, especially when the information is uncertain for a child or affects your plans. It is normal to feel anxious or overwhelmed. However, these notifications are designed to raise awareness and help you make informed decisions, as well as access timely care. 

 

Remember, support is available from your clinic, from genetics professionals, and from communities of other donor-conceived families