Abstract PD8-06: Attitudes towards use of archived biospecimens among patients with cancer
Authors: J Peppercorn, E Campbell, J Rabin, K Quain, F Hlubocky, D Colyar, L Sequist, A Bardia, N Horick, S Isakoff, D Mathews
Journal: Cancer Research (2018)

Abstract Background: Oncology research increasingly involves biospecimen collection and data-sharing. Ethical questions have emerged when researchers seek to use archived biospecimens for purposes that were not well defined in the original informed consent document (ICD). We sought to inform ongoing debates by assessing patient views on these issues. Methods: We administered a cross-sectional self administered anonymous paper survey among patients at the Massachusetts General Hospital Cancer Center. Survey questions addressed attitudes towards cancer research and willingness to donate biospecimens, expectations regarding use of biospecimens and protections of research participants, and preferences regarding specific ethical dilemmas regarding use of archived biospecimens. Results are descriptive with comparisons among participants on the sociodemographic and clinical characteristics using chi-square and Fisher's exact tests. Results: 187 patients offered participation agreed and returned the survey (Response rate 66%). Mean age was 59 (range 2 to 91), 81% were women, 86% were white, and 81% were college educated. Among all participants, 67% had breast cancer and 33% metastatic disease. 34% had participated in a clinical trial, 27% had donated tissue for research and 93% indicated willingness to donate tissue for research. The vast majority of participants (94%) expected both that donated tissue would be used to help as many patients as possible and (92%) that privacy of a donors health information would be carefully protected. 33% expected that donated tissue would only be used for research they specifically approved and 44% that data would not be shared with other researchers. We presented 3 hypothetical scenarios in which researchers sought to use stored biospecimens from a breast cancer clinical trial for future research that was not described in the original iICD. For scenario 1, in which the ICD stated tissue would only be used for breast cancer research, 75% supported use of tissue to study other cancers as well. For scenario 2, in which the ICD specified somatic genetic research only, 89% supported use of tissue for germline research if deemed important by investigators. For scenario 3, in which the ICD stated that data would not be shared beyond the investigators, 72% supported data sharing within a national data repository. Only 28% of participants endorsed concerns that a patient could be identified from their genetic information and 12% were concerned with potential harms from donation to biobanks. However, 38% felt that they owned their tissue and should control how it is used. We did not detect significant differences in responses on the basis of sociodemographic characteristics, cancer type, disease stage, or research experience. Conclusion: Patients with cancer are highly supportive of tissue donation for research and expect that donated tissue will be used to to maximize scientific results. They also expect that interests of research participants will be protected. When there is uncertainly regarding the use of archived biospecimens based on historical ICD and inability to recontact research participants, the interest of participants in seeing productive use of their tissue for science should be considered. Citation Format: Peppercorn J, Campbell E, Rabin J, Quain K, Hlubocky F, Colyar D, Sequist L, Bardia A, Horick N, Isakoff S, Mathews D. Attitudes towards use of archived biospecimens among patients with cancer [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr PD8-06.