What is an actionable result?

What are research results?

Research results are pieces of information that arise from a research
study that might be important for the health of a study participant
or the health of their relatives.

We return results where there is a genetic change or variant and:

  • the effect on your health is well understood, and
  • there are actions that can be taken to improve your health or prevent disease.

This is called “clinically actionable” or “medically actionable” genetic information.

Sometimes people already know about the genetic variant, because it has already been found using another test or as part of another study. Sometimes, the information is new and might be unexpected.

Who gets a result?

If you participated in a research study that partners with My Research Results, the researchers would have asked you whether you want to be notified about genetic results that might be important for you or your family.

Up to 5% of participants (or 5 in every 100 people) receive this kind of result. If you agreed to be notified, and the researchers find important information, they will send you a letter. The letter will let you know that you can call our team to find out more information.

It can sometimes take a long time for research results to be finished. The research team may or may not update you when all results have been finalised. If you have not heard anything once the study has finished, this usually means that no result was found. This would not necessarily mean that you do not have genetic risk factors, just that the study did not find any results that were thought to be important to return.

Which results are returned?

Researchers and doctors have agreed on a list of genes that are considered ‘actionable’ or useful to know for your health. Variants (or changes) in these genes can increase the risk of certain cancers, some types of heart disease, or a range of other medical conditions.

Knowing about these variants can help you and your doctors make an action plan. Depending on the specific variant found, this might include increased screening, changes to medications, or other risk-reducing measures.

What could a result mean for you?

It’s important to know that a genetic variant does not necessarily mean that you have a medical condition or that you will definitely develop one. A variant may mean that you are at increased risk of developing a condition.

There are ways to manage an increased risk, such as screening tests to look for early signs of a condition. When a condition is picked up early, the outcomes can be better. In some cases, the chances of developing a condition can also be reduced.

Confirming your results

When a genetic variant is found as part of a research study, it is important to do another test to confirm the result. Health care teams will arrange another test for you. This can be a stressful time due to the uncertainty. However this process helps to make sure that the information is accurate before you and your doctors take any action.