Firstly, you are entitled to know that the procedure is experimental or unproven. You must be told the reason for the research and exactly what it would involve for you in terms of inconvenience, risk, possible side effects, and financial cost. You must know what the alternative standard procedures or treatments are and be assured that they are not known to be better than the research procedure or treatment. You must be assured of confidentiality— that you will not be identified by name in records going to other centres or when research results are published. You must have the opportunity to ask questions and get answers you can understand. You must be told that, whether or not you agree to take part in the research, you will still be treated by the same practitioner to the best of his or her ability. After entering the research study, you are entitled to withdraw at any stage and still receive treatment from the same practitioner if you wish. You are entitled to take time and consult with others if you wish before deciding whether or not to take part in the research. You must be assured that any adjustments or changes to treatment will be made in your own individual interest. This means, for example, that if the treatment is clearly not helping you or is producing unpleasant or dangerous side effects, it will not be continued.
Naturally, we all hope that advances will be made in cancer research. Taking part in research could be an experience which makes you feel better about yourself. You would be justified in feeling that, in this way, you could use your illness positively to help future patients. However, it is still most important to be fair to yourself and to put your own immediate interests first. Don’t agree to participate in research unless you feel good about it and know exactly what you are agreeing to.
These rights are not so special or extreme, are they? They should sound familiar because, basically, they are the same sorts of rights as should apply in all treatment situations.