Abstract LB-159: The bench with bedside initiative: A “trans-relational” approach to translational research

Abstract

Translational research necessitates the use of human specimens. As per the regulations for the protection of human subjects, study participants (SP) are not required to be informed of the outcomes of research. While individual results should mostly not be reported back to patients to avoid anxiety and misinterpretation of yet to be proven data, general research results should be delivered back to the study participants. It can be argued that SP/researcher relationships are inadequately developed in most cases and that research lacks in transparency. As such, The Bench with Bedside Initiative™ (TBBI) was launched to serve as a trans-relational approach to conducting translational research, where scientists at the bench collaborate and engage with SP at the bedside. As an initial effort of TBBI™ social media and grass roots efforts were used to identify breast cancer survivors to donate blood for a blood-based biomarker study. A web-based survey (https://thebenchwithbedsideinitiative.usc.edu/) was used to determine eligibility and perceptions for enhanced involvement. The study was described to the future SP as a long-term collaboration with the lead researcher where data transparency would be integral to the study design. A total of 316 women completed the survey in a three-month period. When asked, 85% of survey takers said they would be very interested in getting updates on the use of their samples and 100% said they want to know the outcomes of the research. Furthermore, 76% said they had a moral and ethical right to learn the fate of their sample. A total of 86% of survey takers said they would be interested in building a relationship with the research scientist. Among the most widely used words in the comment box were empowering, involvement, hope, future, important, progress, and information. Of 316 women, 132 were deemed eligible to donate blood. As part of TBBI™ 59 eligible SP travelled to meet the PI and under informed consent donated blood in the PI’s lab. SP represented every major racial and ethnic group and socioeconomic background. SP came from 30 cities and traveled an average of 50 miles and as far as 675 miles. The use of biospecimens and associated data for research entails significant ethical obligations to the individuals from whom those specimens were obtained. Researchers owe it to themselves and to their SP to provide information as soon as it becomes available. While the long-term outcomes are yet to be determined, the perceived benefits to a trans-relational approach to conducting human research include diversification of study participants, ease of long-term follow-up, improved clinical trial enrollment, better accountability of resources, and not least of all is providing a lot of hope to those we are trying the hardest to help. Citation Format: Bodour Salhia. The bench with bedside initiative: A “trans-relational” approach to translational research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr LB-159.