No one should ever include you in a clinical trial without asking you. A doctor, nurse or other researcher will ask your permission, and they can’t enter you into the trial if you don’t give your consent.

To help you decide whether you want to take part, the researchers should tell you all about the study:

• what it is trying to find out
• how you will be treated
• what you will have to do.

Guidelines have been drawn up for researchers, to tell them what information people need to help them decide whether to take part in a clinical trial. But there is a lot of discussion about how much people really want to know and this varies from person to person.

It’s important that you are satisfied that you have enough information to make an informed decision. You should feel free to ask any questions that you believe are important in helping you to reach a decision. You should also feel satisfied that you have been given enough time to think about the trial and what it will mean to you before you decide.

The person who suggested that you take part in the trial should first discuss it with you and answer your immediate questions. They should be able to give you a patient information leaflet or factsheet about the trial that you can take away and read in your own time. Any other treatments that may be appropriate in your situation should be discussed with you. You may want to talk about it with your family or friends and think about any practical aspects, such as extra appointments and tests.

If you decide that you wish to take part, you may be asked to give your consent verbally to the person carrying out the trial, who will write it in your notes. You will then be asked to sign a form that says that you agree to take part, and the form will be countersigned. You will be given a copy to keep.

If you decide that you do not wish to take part in the trial, you can tell your doctor or nurse. Your decision will be respected and you don’t have to give a reason. There will be no change in the way that you are treated by the hospital staff and you will be offered the standard treatment for your situation.

Remember that, even after you have given your consent, you can leave the trial without giving a reason at any time and your doctors will not hold it against you. If you are having a new treatment as part of a trial and then leave the trial, you may not be able to continue having the new treatment. In this situation you will be given the appropriate standard treatment for your type of cancer.

Future research using blood and tumour samples

Many blood samples and bone marrow or tumour biopsies may be taken to help make the right diagnosis. You may be asked for your consent to use some of your samples for research into cancer. If you are taking part in a trial you may also be asked to give other samples which may be frozen and stored for future use when new research techniques become available. These samples will have your name removed from them so you can’t be identified.

The research may be carried out at the hospital where you are treated, or it may be at another hospital. This type of research usually takes a long time and it can be many years before any results are available. The samples will, however, be used to increase knowledge about the causes of cancer and its treatment, and so, hopefully, improve the outlook for future patients.