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Communicating Effectively About Donation for the Genotype-Tissue Expression Project: The Process and Implementation of a Tissue Requester Training Program

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By: , , & Edited by: Published: 2020 | Product: SAGE Research Methods Cases: Medicine and Health
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Abstract

This research study was part of a larger study, Genotype-Tissue Expression Project (GTEx), that collected the tissue of deceased individuals for donation with intentions to establish standards for a national biobank. The project collected biospecimens from over 900 deceased individuals to explore the relationship between genetic variation and gene expression. Organ Procurement Organizations (OPOs), the national organizations responsible for obtaining organs and tissues for transplantation from deceased individuals, managed the tissue collection process and requested authorization for donation from the family decision makers of deceased patients. Our project was the Ethical, Legal, and Social Issues sub-study. We were charged with examining the social and ethical issues concerning the decision to donate deceased tissue to the GTEx project and the subsequent policy implications and developing new training for the OPO requesters who asked families to donate. We created an interactive video-based online training for GTEx OPO requesters. To test its efficacy, we designed a randomized test of the intervention. The training program was based in adult learning theory to develop the content of the training as well as the training process. We evaluated the outcomes of the study using a mixed quantitative-qualitative methodology. This case study will provide insight to the learner about how to design an educational intervention as well as the difficulty of successfully collecting data for a randomized controlled trial in a real-world setting.

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