Normal and malignant tissue obtained from surgery or biopsies is being increasingly used as a research tool to further our understanding of the biological basis of cancer. The discovery of new genetic and biochemical pathways responsible for cancer holds the promise for new prevention and treatment strategies. The molecular characteristics of a particular cancer may ultimately allow for more effective individualized tailored therapy. Several concerns are also raised by the use of tissue for research. There may be a compromise on standard diagnostic tests or excessive surgery that could harm the patients. Medical information may not be kept in total confidence. New tests or therapies could be used for financial gain of a research institution or private company without the knowledge of the patients. In some cases, the information on an individual's tissue may not be available to the physician and could at some point in time be useful in making medical decisions. Knowledge of inherited genetic abnormalities could lead to difficulty in obtaining insurance for the patient and their relatives. While safeguards can be adopted for many of these concerns, they cannot be fully protective. Hence, a balance must be struck between medical research advances and patients' right to privacy and other potential abuses. An open dialogue and understanding between investigators and patient advocates is essential. In order to initiate this process, we are conducting a survey of a research initiative and consent form that will be used to obtain tissue for cancer research. Further modifications to the consent form and the research process in general can then evolve. Our goal is to be both cautious and expeditious and to preserve individual's rights and address the concerns of patients and community at large while maintaining the best opportunity to make progress in the treatment and prevention of cancer.



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