More Information
What is Involved?
Registration on the website
Email invitation to enroll
Access to the app - information and videos on genetic testing
Genetic testing decision making
Saliva collection
Return of genetic testing results
Why are We Doing the Study?
Breast, ovary, bowel, and womb cancers make up half of all cancers in women. Around 15-20% (15 to 20 in 100 cases) of ovary and 3-4% (3 to 4 in 100 cases) of breast, womb, and bowel cancers are linked to cancer genes and may be prevented.
People with a genetic change that puts them at increased risk of any of these cancers have ways to help them manage their risk through the NHS. This may include screening to find cancers earlier when they are easier to treat, and surgery or medication to prevent cancers from developing. This can save lives.
Currently, genetic testing is only available on the NHS to people who meet certain criteria. For example, those who have had certain cancers, have a strong family history of cancer, or those with Jewish ancestry. But many people may not have a strong family history, or meet NHS testing criteria.
This means that the current system of testing misses 50% to 80% of people (50 to 80 in 100 people) who have a genetic change. It is thought that only around 3 in 100 people overall who have a genetic change that increases their risk of cancer know about it.
Given the effective screening and preventive options that are available, this represents a huge, missed opportunity to prevent cancers or find them earlier.
Aims of the Study
To evaluate the option of offering genetic testing to everyone who may want it. This is regardless of whether they or their families have had cancer.
To find out how many people decide to have genetic testing and how many of them are found to have a genetic change.
To evaluate people’s experience with using the app and how this approach to genetic testing affects their quality-of-life, satisfaction, and mental well-being. This will give us a better understanding of how well the app works as a way of offering genetic testing to people.
To find out how people found to be at increased risk decide to manage their risk.
To assess if this way of offering genetic testing to people is affordable for the NHS.