Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

Little is known about how cancer patients feel about donating their tissue, especially in a multiethnic population. Structured interviews were conducted with 30 patients recently diagnosed with cancer, referred to the study by six cancer surgeons and oncologists and by other patients in the study. The participants reported a variety of cancers, and the sample reflected the racial distribution of Hawai`i, including Caucasians (23%), Native Hawaiians and Pacific Islanders (27%), Asians (37%), Hispanics (7%), Native Americans (3%), and African Americans (3%). The interview questions and analysis were guided by the Framework Approach, with interview questions based on pre-set aims. Findings suggest that most cancer patients would donate cancer tissue to science, especially if informed that doing so could help researchers find causes of and cures for cancer. Patients varied on when in their cancer journey they would be most receptive to being asked for a donation, however two-thirds thought they would be more receptive if approached after surgery. Only three of the 30 patients said they would want to be re-consented each time their tissue is requested for research. They identified their physician as the preferred messenger regarding tissue donation. No obvious differences were seen by race. Findings confirm those of other researchers who have reported broad support for biobank participation if informed consent and confidentiality could be assured. Given that the physician was seen as the key messenger about biobanking, more education is needed around cancer tissue collection for physicians, as well as for cancer patients.