Ethical Issues in Maintaining a Rapid Tissue Donation Program

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 DESCRIPTION (provided by applicant): Recent advances in genomics and proteomics are allowing for a targeted, precision medicine approach to the diagnosis and treatment of cancer. For precision medicine, repositories of blood and tissue samples combined with personal information are normally collected at the time of surgical procedures to reveal factors associated with treatment response, progression, and overall survival. However, tissue from patients with refractory disease is rarely collected so less is known about why chemotherapy drugs failed. The process and goal of rapid tissue donation (RTD) is to procure high quantity and quality tumor tissue from both the primary tumor and site(s) of metastasis within 24 hours after patient death this tissue can be stored and used for future genomic and proteomic research. Recruiting cancer patients to participate in RTD programs has ethical challenges. The offer of participation in the RTD program can be seen as a sign of impending death. Physicians and staff may be uncomfortable recruiting patients, fearing the offer represents a loss of hope. Family and loved ones may be unwilling to comply with the patient's consent to participate due to the logistics involved in moving the body soon after death. Policies and protocols for sharing genomic results with next of kin have begun to emerge, yet there are sparse studies specific to lung cancer populations. In a pilot project, we conducted multiple stakeholder assessments to identify perceptions of RTD. The stakeholders included: patients and loved ones, hospice, pathologists, funeral homes, and health care providers. Overall, there was strong support for the RTD program. Based on our findings showing support for the hypothetical RTD program, we obtained IRB approval to implement an RTD program. The goal of this application is to evaluate real-time stakeholder perceptions of Moffitt's Thoracic Oncology RTD program. Specifically, we will explore barriers and facilitators to participating in our established RTD program from multiple stakeholder perspectives which includes: Stage IV lung cancer patients, families/Next of Kin (NOK); health care providers and team; scientific staff involved in tissue collection, and pathologists. Our aims were created to: examine the process of consent to the RTD program and identify barriers and facilitators of each phase of the process of the re-consent, transportation, tissue collection and return of the body through qualitative semi-structured interviews with NOK, hospice, funeral home, ambulance, physicians and staff. The ultimate goal is to monitor and improve upon the ethical and psychosocial aspects of the RTD program and to disseminate this knowledge to other programs and the scientific community.