
"Health wise I am feeling great. I am a big supporter of trials - it allows new treatments and drugs to be brought in.”
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
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
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 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 () and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Prof Rosalind Eeles
Institute of Cancer Research (ICR)
The Royal Marsden NHS Foundation Trust
Freephone 0808 800 4040
"Health wise I am feeling great. I am a big supporter of trials - it allows new treatments and drugs to be brought in.”