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      Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.

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          Abstract

          Purpose:

          This report describes the return of sequencing results to low-income Latino participants recruited through a Federally Qualified Health Center (FQHC). We describe challenges in returning research results secondary to social determinants of health and present lessons learned to guide future genomic medicine implementation studies in low resource settings.

          Methods:

          500 Latino adults (76% women) consented to research sequencing for a predetermined panel of actionable genes. Providers and staff from the FQHC were engaged to align processes with the practice and a Community Advisory Board grounded the project in the local community.

          Results:

          A pathogenic/likely pathogenic variant was present in 10 participants (2%). Challenges in return of results included the time lag (582±53 days) between enrollment and returning actionable results, difficulty reaching participants, missed appointments, low health literacy, lack of health insurance, and reconciling results with limited information on family history. Return of one actionable result was deferred due to acute emotional distress secondary to recent traumatic life events.

          Conclusion:

          The social determinants of health influence the implementation of genomic medicine in low-income populations in low-resource settings. Considering non-biological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity.

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          Most cited references28

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          Cancer statistics, 2019

          Each year, the American Cancer Society estimates the numbers of new cancer cases and deaths that will occur in the United States and compiles the most recent data on cancer incidence, mortality, and survival. Incidence data, available through 2015, were collected by the Surveillance, Epidemiology, and End Results Program; the National Program of Cancer Registries; and the North American Association of Central Cancer Registries. Mortality data, available through 2016, were collected by the National Center for Health Statistics. In 2019, 1,762,450 new cancer cases and 606,880 cancer deaths are projected to occur in the United States. Over the past decade of data, the cancer incidence rate (2006-2015) was stable in women and declined by approximately 2% per year in men, whereas the cancer death rate (2007-2016) declined annually by 1.4% and 1.8%, respectively. The overall cancer death rate dropped continuously from 1991 to 2016 by a total of 27%, translating into approximately 2,629,200 fewer cancer deaths than would have been expected if death rates had remained at their peak. Although the racial gap in cancer mortality is slowly narrowing, socioeconomic inequalities are widening, with the most notable gaps for the most preventable cancers. For example, compared with the most affluent counties, mortality rates in the poorest counties were 2-fold higher for cervical cancer and 40% higher for male lung and liver cancers during 2012-2016. Some states are home to both the wealthiest and the poorest counties, suggesting the opportunity for more equitable dissemination of effective cancer prevention, early detection, and treatment strategies. A broader application of existing cancer control knowledge with an emphasis on disadvantaged groups would undoubtedly accelerate progress against cancer.
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            The social determinants of health: coming of age.

            In the United States, awareness is increasing that medical care alone cannot adequately improve health overall or reduce health disparities without also addressing where and how people live. A critical mass of relevant knowledge has accumulated, documenting associations, exploring pathways and biological mechanisms, and providing a previously unavailable scientific foundation for appreciating the role of social factors in health. We review current knowledge about health effects of social (including economic) factors, knowledge gaps, and research priorities, focusing on upstream social determinants-including economic resources, education, and racial discrimination-that fundamentally shape the downstream determinants, such as behaviors, targeted by most interventions. Research priorities include measuring social factors better, monitoring social factors and health relative to policies, examining health effects of social factors across lifetimes and generations, incrementally elucidating pathways through knowledge linkage, testing multidimensional interventions, and addressing political will as a key barrier to translating knowledge into action.
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              A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

              To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.
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                Author and article information

                Journal
                9815831
                22061
                Genet Med
                Genet. Med.
                Genetics in medicine : official journal of the American College of Medical Genetics
                1098-3600
                1530-0366
                21 May 2020
                06 May 2020
                September 2020
                06 November 2020
                : 22
                : 9
                : 1552-1559
                Affiliations
                [1 ]Center for Health Promotion and Disease Prevention, Edson College of Nursing and Health Innovation, Arizona State University
                [2 ]Departments of Cardiovascular Medicine (IJK), Health Sciences Research (CRB and RRS,), and Laboratory Medicine and Pathology (SNT) Mayo Clinic, Rochester, MN
                [3 ]Mountain Park Health Center, Phoenix, Arizona
                [4 ]Departments of Endocrinology (EDF) and Health Sciences Research (SL, IC, PY, NML) Mayo Clinic, Scottsdale, AZ
                [5 ]Division of Endocrinology, Department of Medicine, and the Center for Disparities in Diabetes, Obesity, and Metabolism, University of Arizona, Tucson, Arizona
                Author notes
                Corresponding Author Contact: Gabriel Q. Shaibi, PhD, Gabriel.shaibi@ 123456asu.edu Phone: 602-496-0909
                Article
                NIHMS1595413
                10.1038/s41436-020-0806-5
                7483616
                32371921
                07d3f9db-c91d-4dd9-92bd-0550869fbb5e

                Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use: http://www.nature.com/authors/editorial_policies/license.html#terms

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                Categories
                Article

                Genetics
                disparities,fqhc,latino,implementation,ror
                Genetics
                disparities, fqhc, latino, implementation, ror

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