Getting results
There are two different test results: no conditions suspected, and condition suspected. The way we contact you depends on the result.
No conditions suspected
If no conditions are suspected, we will contact you by letter or email, a few months after birth.
Most babies will get this result — about 99 in 100. It means we did not find any of the gene changes known to cause the genetic conditions in this study.
This does not mean your baby will never get sick. There are many other health conditions they could get.
We’ll send a copy of this result in a letter to your GP. You can always talk to them about the result. You should also talk to them if you are worried about your baby’s health or your family history.
Condition suspected
If a condition is suspected, you will be contacted by phone within a couple of months after birth.
A very small number of babies in this study will get this result — about 1 in 100. It means we found one of the gene changes known to cause one of the genetic conditions in our study.
What happens next
- Phone call from the NHS
- Follow up tests
- Diagnosis
- Treatment plan
- Feedback
Dealing with uncertainty
We only test for conditions the NHS knows how to diagnose and treat. But if we suspect your baby has a condition, there might be some uncertainty.
Possible uncertainties:
- Incorrect, unclear, or delayed diagnosis
- Unclear symptoms
- Effect on family
These possible uncertainties can be worrying. We and the specialist team can connect you with more information, genetic counselling, and support groups.
Keep in mind
Although unlikely, it’s possible that your baby could get an incorrect result at first. Here is an example to consider.
When your baby is 3 weeks old, you find out that they are suspected to have a genetic condition.
Your baby’s doctor schedules some extra tests. In the meantime, you read about the condition and become worried.
A few weeks later, the results come back. Your baby does not have the condition after all.
The specialist explains that the Generation Study result was not a diagnosis, and in rare occasions, it can be incorrect.
This situation can happen with other tests too, like NHS newborn blood spot test. It can be a confusing time for families.
We recommend considering this example carefully before you join the study.