"Health wise I am feeling great. I am a big supporter of trials - it allows new treatments and drugs to be brought in.”
A study to understand more about issues related to genetic testing for prostate cancer risk
We know that this is an especially worrying time for people with cancer and their family and friends. We have separate information about coronavirus and cancer. Please read that information alongside this page. We will update that information as guidance changes.
This study looked at the mental, emotional and social (psychosocial) issues related to genetic testing for prostate cancer risk. It was for men taking part in the PROFILE study, which hoped to find out if gene testing would be useful in screening for prostate cancer.
Doctors believe that pictures of people’s gene changes (genetic profiles) will become routine in medical care. Researchers wanted to understand more about what men think about being tested, and look at the issues surrounding genetic testing. Telling people that their genes put them at a higher risk of cancer may cause emotional, mental and social difficulties. So it is important to work out what the issues may be before doctors offer such testing routinely.
This study was one of the first to look at the interpretation of information from genetic profile results. The aims of the study were to
- Find out why men are interested in gene testing for prostate cancer, and what they think they would do with this information
- Look at the mental, emotional and social (psychosocial) issues involved in gene testing for prostate cancer
- Highlight issues that healthcare professionals and organisations need to consider for routine testing
Summary of results
The study team found that although the men found the results of the genetic profiling interesting, they didn’t think the results were more significant than their family history of prostate cancer. The researchers did not find this surprising as the men had known about prostate cancer in their family for a long time, but genetic testing was quite new to them.
The study was for men with a family history of prostate cancer in one of the following situations
- Men whose father, brother or son were diagnosed with prostate cancer under the age of 70
- Men who have 2 relatives on the same side of the family diagnosed with prostate cancer, and at least one was under 70 years old when they were diagnosed
- Men who have 3 relatives on the same side of the family diagnosed with prostate cancer at any age
The genetic profiling results were given to the men alongside genetic counselling.
All the men taking part filled out 2 questionnaires. One before they started the PROFILE study, and one when they had finished. The questionnaires asked how the men felt about having gene testing. The study team also interviewed some of the men. 107 men took part. Of those, 95 completed both questionnaires and the researchers interviewed 26.
The main findings were that
- The men had a good understanding of the genetic information they were given
- Overall, the men felt reassured by the test and felt that it helped to improve understanding of their prostate cancer risk, but nearly all of them felt that it was not going to change their attitude to screening.
- Just under half of the men interviewed said that the genetic profiling information hadn’t made much difference to them or their families
- Most men said that their family experience of prostate cancer led them to believe that they are destined to get prostate cancer regardless of the genetic test results
- Most men felt that the genetic information was not relevant for them right now, but that it might be in the future or for the next generation to help identify who is at increased risk
- Overall, the men thought that genetics would be very important in healthcare in the future to identify higher risk groups and help with screening
- Most of them understood the limitations of genetic testing
- Some men were concerned that genetic testing could worry people who are told they are at risk of developing prostate cancer in the future
- The men used the results of their genetic tests to talk to others and this is important as it can help genetic information to become part of standard clinical practice
The researchers concluded that this was a useful study to help understand more about the issues related to genetic testing for men with prostate cancer.
Overall the men felt that genetic profile results would be useful in the future to decide who should be screened, to help with symptom awareness and to talk to others about risk.
The researchers say that genetic testing is complicated as cancer risk is a combination of both genetic and environmental factors. If future prostate screening programmes include genetic information to decide on who can be screened, it is important to understand the strengths and the limitations of genetic testing. The researchers also say that it is important that genetic profiling test results are given alongside detailed individual genetic counselling.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Prof Rosalind Eeles
Institute of Cancer Research (ICR)
The Royal Marsden NHS Foundation Trust