Aligning policy and healthcare services with Veterans' values and preferences for results from Whole Genome Sequencing

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Over the past decade, genomic medicine has rapidly expanded from single gene testing to include next- generation sequencing (NGS) tests, such as Whole Genome Sequencing (WGS), that reveal extensive genomic information. During this same time period, the technical cost of sequencing a genome has fallen from over $30 million in 2003 to approximately $1,000 in 2016. VA and the nation are making significant investments in the research infrastructure needed to accelerate the translation of new genomic technologies to support personalized healthcare where risk assessment, diagnosis, prognosis, and treatment are informed by a person's genomics. The VA Genomic Medicine Program's Million Veterans Program (MVP) initiated in 2009 and the national $215 million Precision Medicine Initiative launched in 2015 are expected to further speed genomic discoveries and translation in personalized healthcare. In step with the national Precision Medicine Initiative, the VA is developing strategies to release the results of genomic analyses to the next 500,000 Veterans who will be enrolled in the MVP cohort and WGS and other genome-based testing is beginning to be used beyond research, to inform disease risk, diagnosis, and treatment, in VA clinical settings. Juxtaposed with government and public enthusiasm for the potential of NGS enabled applications, a substantial gap exists between what WGS can deliver in terms of the quantity of genomic information, and what results can be interpreted that patients would find meaningful. One of the challenges is the complexity of WGS information that will include findings unrelated to the original purpose of testing and results that have uncertain significance in preventing, diagnosing, and treating disease. With emerging use of WGS and other genome-based testing in VA, there is an urgent need to understand what information Veterans think would be important in their healthcare. However, little systematic quantitative information is available for VA leadership decision making on how Veterans would assess the value of WGS information, or their preferences for the healthcare services needed to interpret the findings and their implications for health and healthcare. The proposed project is timely, addressing a significant gap in knowledge of Veterans' preferences and taking advantage of an opportunity to engage key VA stakeholders--Veterans and VA executives--at a critical moment when the introduction of new technologies will require the adaptation of clinical practices. In this project, our goal is to establish a foundation for understanding 1) how Veterans value the findings from WGS and other NGS enabled tests; 2) what healthcare services Veterans prefer to help them comprehend the information from these tests and to use the findings in their healthcare; and 3) how VA clinical leaders and policy makers use knowledge of Veterans' values and preferences for WGS in their development of clinical services that incorporate information from WGS and other genome-based tests. To accomplish the aims of the project, we used sequential mixed methods (qualitative-quantitative-qualitative). We will identify Veterans' values and preferences for WGS using focus groups and structured cognitive interviews and then conduct a national population-based survey of Veterans' preferences using choice-based conjoint analysis. To translate findings on Veterans' preferences, we will conduct facilitated deliberative process groups to engage VA leaders in discussion about how Veterans' perspectives can inform VA policy in clinical genomics. This project is innovative. Its rigorous design and strong stakeholder engagement methods are expected to contribute to Veteran-centered care in clinical genomic medicine. Further, the findings will be highly relevant to VA executive decision-making about how to disclose the results of WGS and other genome-based tests to Veterans.