Displaying 1 - 40 of 40CSV
Shim, J. K., McMahon, C. E., Saco, L., Bentz, M., Foti, N., & Lee, S. S.-J. (2025). A qualitative study of diversity in precision medicine research: The development and stakeholder assessment of a Diversity Decision Map. Journal of Clinical and Translational Science, 9(1). https://doi.org/10.1017/cts.2025.45
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Matthews, L. J., Martschenko, D. O., V, C. L., & Sabatello, M. (2025). Intersectionality in a Sociogenomic World: How do Race, Disability, Socioeconomic Status, and Polygenic Prediction Interact to Impact Perceptions of Educational Trajectories? Genetics in Medicine, 101368. https://doi.org/10.1016/j.gim.2025.101368
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Karabin, J., Adsit-Morris, C., Lee, S. S.-J., Fullerton, S. M., Cho, M. K., & Reardon, J. (2024). A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine. Journal of Responsible Innovation, 11(1). https://doi.org/10.1080/23299460.2024.2413698
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Weiss, R., Milo Rasouly, H., Marasa, M., Fernandez, H., Lin, F., & Sabatello, M. (2024). Nephrologists’ Views on a Workflow for Returning Genetic Results to Research Participants. Kidney International Reports, 9(11), 3278–3289. https://doi.org/10.1016/j.ekir.2024.08.026
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Fernandez, H. E., Lipton, M., Balderes, O., Lin, F., Marasa, M., Milo Rasouly, H., & Sabatello, M. (2024). Pediatric nephrologists’ perspectives and clinical practices related to genetic testing and education. Pediatric Nephrology. https://doi.org/10.1007/s00467-024-06539-7
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Russo, F., Chatterjee, D., DeMaria, N., Florido, M. E., Marasa, M., Sabatello, M., Wynn, J., & Milo Rasouly, H. (2024). Negative results from DNA-based population screening for adult-onset diseases: the recipients’ experience. Journal of Community Genetics. https://doi.org/10.1007/s12687-024-00736-5
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Dolan, D. D., Lee, R. H., Cho, M. K., & Lee, S. S.-J. (2024). Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals. AJOB Empirical Bioethics, 15(2), 147–153. https://doi.org/10.1080/23294515.2024.2355898
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Lewis, A. C. F., Chisholm, R. L., Connolly, J. J., Esplin, E. D., Glessner, J., Gordon, A., Green, R. C., Hakonarson, H., Harr, M., Holm, I. A., Jarvik, G. P., Karlson, E., Kenny, E. E., Kottyan, L., Lennon, N., Linder, J. E., Luo, Y., Martin, L. J., Perez, E., … Fullerton, S. M. (2024). Managing differential performance of polygenic risk scores across groups: Real-world experience of the eMERGE Network. The American Journal of Human Genetics, 111(6), 999–1005. https://doi.org/10.1016/j.ajhg.2024.04.005
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Casillan, A., Florido, M. E., Galarza-Cornejo, J., Bakken, S., Lynch, J. A., Chung, W. K., Mittendorf, K. F., Berner, E. S., Connolly, J. J., Weng, C., Holm, I. A., Khan, A., Kiryluk, K., Limdi, N. A., Petukhova, L., Sabatello, M., & Wynn, J. (2023). Participant-guided development of bilingual genomic educational infographics for Electronic Medical Records and Genomics Phase IV study. Journal of the American Medical Informatics Association, 31(2), 306–316. https://doi.org/10.1093/jamia/ocad207
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Vasquez, E. E., Foti, N., McMahon, C. E., Jeske, M., Bentz, M., Fullerton, S., Shim, J. K., & Lee, S. S.-J. (2023). Rethinking Benefit and Responsibility in the Context of Diversity: Perspectives from the Front Lines of Precision Medicine Research. Public Health Genomics, 103–112. Portico. https://doi.org/10.1159/000531656
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Green, S., Prainsack, B., & Sabatello, M. (2023). The Roots of (in)Equity in Precision Medicine: Gaps in the Discourse. Personalized Medicine, 21(1), 5–9. https://doi.org/10.2217/pme-2023-0097
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McMahon, C. E., Foti, N., Jeske, M., Britton, W. R., Fullerton, S. M., Shim, J. K., & Lee, S. S.-J. (2023). Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers. AJOB Empirical Bioethics, 15(2), 108–119. https://doi.org/10.1080/23294515.2023.2279965
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Moorthy, T., Nguyen, H., Chen, Y., Austin, J., Smoller, J. W., Hercher, L., & Sabatello, M. (2023). How do experts in psychiatric genetics view the clinical utility of polygenic risk scores for schizophrenia? American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 192(7–8), 161–170. Portico. https://doi.org/10.1002/ajmg.b.32939
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Shim, J. K., Foti, N., Vasquez, E., Fullerton, S. M., Bentz, M., Jeske, M., & Lee, S. S.-J. (2023). Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity. AJOB Empirical Bioethics, 14(4), 185–196. https://doi.org/10.1080/23294515.2023.2201478
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Jungels, A., Demers, L., Ford, E., Stevens, B. K., Sabatello, M., & Dasgupta, S. (2023). Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling. Human Genetics and Genomics Advances, 4(4), 100228. https://doi.org/10.1016/j.xhgg.2023.100228
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Bentz, M., Saperstein, A., Fullerton, S. M., Shim, J. K., & Lee, S. S.-J. (2024). Conflating race and ancestry: Tracing decision points about population descriptors over the precision medicine research life course. Human Genetics and Genomics Advances, 5(1), 100243. https://doi.org/10.1016/j.xhgg.2023.100243
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Connolly, J. J., Berner, E. S., Smith, M., Levy, S., Terek, S., Harr, M., Karavite, D., Suckiel, S., Holm, I. A., Dufendach, K., Nelson, C., Khan, A., Chisholm, R. L., Allworth, A., Wei, W.-Q., Bland, H. T., Clayton, E. W., Soper, E. R., Linder, J. E., … Sabatello, M. (2023). Education and electronic medical records and genomics network, challenges, and lessons learned from a large-scale clinical trial using polygenic risk scores. Genetics in Medicine, 25(9), 100906. https://doi.org/10.1016/j.gim.2023.100906
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Green, S., Prainsack, B., & Sabatello, M. (2023). Precision medicine and the problem of structural injustice. Medicine, Health Care and Philosophy, 26(3), 433–450. https://doi.org/10.1007/s11019-023-10158-8
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Clayton, E. W., Smith, M. E., Anderson, K. C., Chung, W. K., Connolly, J. J., Fullerton, S. M., McGowan, M. L., Peterson, J. F., Prows, C. A., Sabatello, M., & Holm, I. A. (2023). Studying the impact of translational genomic research: Lessons from eMERGE. The American Journal of Human Genetics, 110(7), 1021–1033. https://doi.org/10.1016/j.ajhg.2023.05.011
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Lee, S. S.-J., Caruncho, M., Chung, W. K., Johnston, J., Tabb, K., & Appelbaum, P. S. (2023). Individualized interventions for rare genetic conditions and the research-treatment spectrum: Stakeholder perspectives. Genetics in Medicine, 25(6), 100832. https://doi.org/10.1016/j.gim.2023.100832
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Rasouly, H. M., Balderes, O., Marasa, M., Fernandez, H., Lipton, M., Lin, F., Gharavi, A. G., & Sabatello, M. (2023). The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists. Genetics in Medicine, 25(5), 100814. https://doi.org/10.1016/j.gim.2023.100814
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Linder, J. E., Allworth, A., Bland, H. T., Caraballo, P. J., Chisholm, R. L., Clayton, E. W., Crosslin, D. R., Dikilitas, O., DiVietro, A., Esplin, E. D., Forman, S., Freimuth, R. R., Gordon, A. S., Green, R., Harden, M. V., Holm, I. A., Jarvik, G. P., Karlson, E. W., Labrecque, S., … Peterson, J. F. (2023). Returning integrated genomic risk and clinical recommendations: The eMERGE study. Genetics in Medicine, 25(4), 100006. https://doi.org/10.1016/j.gim.2023.100006
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Reardon, J., Lee, S. S.-J., Goering, S., Fullerton, S. M., Cho, M. K., Panofsky, A., & Hammonds, E. M. (2023). Trustworthiness matters: Building equitable and ethical science. Cell, 186(5), 894–898. https://doi.org/10.1016/j.cell.2023.01.008
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Moore, C. B., Dolan, D. D., Yarmolinsky, R., Cho, M. K., & Soo-Jin-Lee, S. (2023). The ELSI Virtual Forum, 30 Years of the Genome: Integrating and Applying ELSI Research. Journal of Law, Medicine & Ethics, 51(3), 661–671. https://doi.org/10.1017/jme.2023.109
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Lencz, T., Sabatello, M., Docherty, A., Peterson, R. E., Soda, T., Austin, J., Bierut, L., Crepaz-Keay, D., Curtis, D., Degenhardt, F., Huckins, L., Lazaro-Munoz, G., Mattheisen, M., Meiser, B., Peay, H., Rietschel, M., Walss-Bass, C., & Davis, L. K. (2022). Concerns about the use of polygenic embryo screening for psychiatric and cognitive traits. The Lancet Psychiatry, 9(10), 838–844. https://doi.org/10.1016/s2215-0366(22)00157-2
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Lee, S. S., Fullerton, S. M., McMahon, C. E., Bentz, M., Saperstein, A., Jeske, M., Vasquez, E., Foti, N., Saco, L., & Shim, J. K. (2022). Targeting Representation: Interpreting Calls for Diversity in Precision Medicine Research. The Yale journal of biology and medicine, 95(3), 317–326.

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Lemke, A. A., Esplin, E. D., Goldenberg, A. J., Gonzaga-Jauregui, C., Hanchard, N. A., Harris-Wai, J., Ideozu, J. E., Isasi, R., Landstrom, A. P., Prince, A. E. R., Turbitt, E., Sabatello, M., Schrier Vergano, S. A., Taylor, M. R. G., Yu, J.-H., Brothers, K. B., & Garrison, N. A. (2022). Addressing underrepresentation in genomics research through community engagement. The American Journal of Human Genetics, 109(9), 1563–1571. https://doi.org/10.1016/j.ajhg.2022.08.005
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Dolan, D. D., Lee, S. S.-J., & Cho, M. K. (2022). Three decades of ethical, legal, and social implications research: Looking back to chart a path forward. Cell Genomics, 2(7), 100150. https://doi.org/10.1016/j.xgen.2022.100150
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Shim, J. K., Bentz, M., Vasquez, E., Jeske, M., Saperstein, A., Fullerton, S. M., Foti, N., McMahon, C., & Lee, S. S.-J. (2022). Strategies of inclusion: The tradeoffs of pursuing “baked in” diversity through place-based recruitment. Social Science & Medicine, 306, 115132. https://doi.org/10.1016/j.socscimed.2022.115132
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Waldrop, G., Safavynia, S. A., Barra, M. E., Agarwal, S., Berlin, D. A., Boehme, A. K., Brodie, D., Choi, J. M., Doyle, K., Fins, J. J., Ganglberger, W., Hoffman, K., Mittel, A. M., Roh, D., Mukerji, S. S., Der Nigoghossian, C., Park, S., Schenck, E. J., Salazar‐Schicchi, J., … Claassen, J. (2022). Prolonged Unconsciousness is Common in COVID‐19 and Associated with Hypoxemia. Annals of Neurology, 91(6), 740–755. Portico. https://doi.org/10.1002/ana.26342
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Guerrini, C. J., Robinson, J. O., Bloss, C. C., Bash Brooks, W., Fullerton, S. M., Kirkpatrick, B., Lee, S. S.-J., Majumder, M., Pereira, S., Schuman, O., & McGuire, A. L. (2022). Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services. The American Journal of Human Genetics, 109(3), 486–497. https://doi.org/10.1016/j.ajhg.2022.01.013
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Jeske, M., Vasquez, E., Fullerton, S. M., Saperstein, A., Bentz, M., Foti, N., Shim, J. K., & Lee, S. S.-J. (2022). Beyond inclusion: Enacting team equity in precision medicine research. PLOS ONE, 17(2), e0263750. https://doi.org/10.1371/journal.pone.0263750
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Martucci, J., Prado, Y., Rope, A. F., Weinmann, S., White, L., Zepp, J., Henrikson, N. B., Feigelson, H. S., Hunter, J. E., & Lee, S. S.-J. (2022). An Examination of the Ethical and Legal Limits in Implementing “Traceback Testing” for Deceased Patients. Journal of Law, Medicine & Ethics, 50(4), 818–832. https://doi.org/10.1017/jme.2023.23
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