Division of Ethics
Ma, B. M., Milo Rasouly, H., & Sabatello, M. (2025). To do or not to do—genetic testing for autosomal dominant polycystic kidney disease in children and adolescents. Kidney International, 108(1), 17–19. https://doi.org/10.1016/j.kint.2025.05.001
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Martschenko, D. O., Lee, S. S.-J., Meyer, M. N., & Parens, E. (2025). Social and Behavioral Genomics: On the Ethics of the Research and Its Downstream Applications. Annual Review of Genomics and Human Genetics. https://doi.org/10.1146/annurev-genom-011224-015733
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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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Columbia Affiliation
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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Columbia Affiliation
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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Columbia Affiliation
Sabatello, M., Bakken, S., Chung, W. K., Cohn, E., Crew, K. D., Kiryluk, K., Kukafka, R., Weng, C., & Appelbaum, P. S. (2024). Return of polygenic risk scores in research: Stakeholders’ views on the eMERGE-IV study. Human Genetics and Genomics Advances, 5(2), 100281. https://doi.org/10.1016/j.xhgg.2024.100281
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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Medicine; Division of Nephrology; Division of Hematology/Oncology; Department of Epidemiology; Department of Biomedical Informatics; Department of Sociomedical Sciences; Mailman School of Public Health; Department of Psychiatry; Center for Law, Ethics, and Psychiatry; Center for Precision Medicine and Genomics; Division of Ethics; Department of Medical Humanities and Ethics; School of Nursing
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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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Biomedical Informatics; Department of Medicine; Division of Nephrology; Department of Genetics and Development; Department of Pediatrics; School of Nursing; Department of Epidemiology; Mailman School of Public Health; Department of Dermatology; Center for Precision Medicine and Genomics; Department of Medical Humanities and Ethics; Division of Ethics
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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Lewis V, C., Huebner, J., Hripcsak, G., & Sabatello, M. (2023). Underrepresentation of blind and deaf participants in the All of Us Research Program. Nature Medicine, 29(11), 2742–2747. https://doi.org/10.1038/s41591-023-02607-x
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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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Columbia Affiliation
Martschenko, D. O., Matthews, L. J., & Sabatello, M. (2024). Social and Behavioral Genomics: What Does It Mean for Pediatrics? The Journal of Pediatrics, 264, 113735. https://doi.org/10.1016/j.jpeds.2023.113735
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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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Columbia Affiliation
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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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Medicine; Division of Nephrology; Department of Pediatrics; Division of Pediatric Nephrology and Hypertension; Center for Precision Medicine and Genomics; Institute for Genomic Medicine; Division of Ethics; Department of Medical Humanities and Ethics
Kapur, S. L., & Sabatello, M. (2023). People with disability and privacy in precision medicine research: what’s at stake? Trends in Genetics, 39(5), 335–337. https://doi.org/10.1016/j.tig.2023.01.001
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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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Columbia Affiliation
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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Sabatello, M., Martschenko, D. O., Cho, M. K., & Brothers, K. B. (2022). Data sharing and community-engaged research. Science, 378(6616), 141–143. https://doi.org/10.1126/science.abq6851
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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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Columbia Affiliation
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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Columbia Affiliation
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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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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Lee, S. S.-J., Appelbaum, P. S., & Chung, W. K. (2022). Challenges and potential solutions to health disparities in genomic medicine. Cell, 185(12), 2007–2010. https://doi.org/10.1016/j.cell.2022.05.010
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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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Garofalo, D. C., Rosenblum, H. A., Zhang, Y., Chen, Y., Appelbaum, P. S., & Sabatello, M. (2022). Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals. Genetics in Medicine, 24(3), 712–721. https://doi.org/10.1016/j.gim.2021.11.015
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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Psychiatry; Center for Law, Ethics, and Psychiatry; Department of Medicine; Division of Nephrology; Department of Epidemiology; Mailman School of Public Health; Department of Biostatistics; Center for Precision Medicine and Genomics; Division of Ethics; Department of Medical Humanities and Ethics; Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
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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Kauffman, T. L., Prado, Y. K., Reyes, A. A., Zepp, J. M., Sawyer, J., White, L. L., Martucci, J., Salas, S. B., Vertrees, S., Rope, A. F., Weinmann, S., Henrikson, N. B., Lee, S. S.-J., Feigelson, H. S., & Hunter, J. E. (2021). Feasibility of a Traceback Approach for Using Pathology Specimens to Facilitate Genetic Testing in the Genetic Risk Analysis in Ovarian Cancer (GRACE) Study Protocol. Journal of Personalized Medicine, 11(11), 1194. https://doi.org/10.3390/jpm11111194
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Sabatello, M., Martin, B., Corbeil, T., Lee, S., Link, B. G., & Appelbaum, P. S. (2021). Nature vs. Nurture in Precision Education: Insights of Parents and the Public. AJOB Empirical Bioethics, 13(2), 79–88. https://doi.org/10.1080/23294515.2021.1983666
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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Medicine; Division of Nephrology; Department of Biostatistics; Department of Psychiatry; Center for Law, Ethics, and Psychiatry; Center for Precision Medicine and Genomics; Department of Medical Humanities and Ethics; Mailman School of Public Health; Division of Ethics; Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
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Fischkoff, D., Prager, K., Dastidar, J., Dugdale, L., Neuberg, G., Nemeth, S., & Fischkoff, K. (2021). Ethical Framework to Guide Decisions of Treatment Over Objection. Journal of the American College of Surgeons, 233(4), 508–516. https://doi.org/10.1016/j.jamcollsurg.2021.07.003
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Lee, S. S.-J. (2021). The Ethics of Consent in a Shifting Genomic Ecosystem. Annual Review of Biomedical Data Science, 4(1), 145–164. https://doi.org/10.1146/annurev-biodatasci-030221-125715
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Sabatello, M., Chao, A., Insel, B. J., Corbeil, T., Link, B. G., & Appelbaum, P. S. (2021). Psychiatric genetic essentialism and stigma in child custody proceedings: public views. Journal of Law and the Biosciences, 8(2). https://doi.org/10.1093/jlb/lsab026
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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Medicine; Division of Nephrology; Department of Psychiatry; Center for Law, Ethics, and Psychiatry; Center for Precision Medicine and Genomics; Division of Ethics; Department of Medical Humanities and Ethics; Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
Gal, D. B., Deuitch, N., Lee, S. S. J., Simon, R. T., & Char, D. S. (2021). Parental Attitudes Toward Clinical Genomic Sequencing in Children With Critical Cardiac Disease. Pediatric Critical Care Medicine, 22(8), e419–e426. https://doi.org/10.1097/pcc.0000000000002669
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Columbia Affiliation
Ahimaz, P., Sabatello, M., Qian, M., Wang, A., Miller, E. M., Parrott, A., Lal, A. K., Chatfield, K. C., Rossano, J. W., Ware, S. M., Parent, J. J., Kantor, P., Yue, L., Wynn, J., Lee, T. M., Addonizio, L. J., Appelbaum, P. S., & Chung, W. K. (2021). Impact of Genetic Testing for Cardiomyopathy on Emotional Well-Being and Family Dynamics: A Study of Parents and Adolescents. Circulation: Genomic and Precision Medicine, 14(4). https://doi.org/10.1161/circgen.120.003189
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Columbia Affiliation
Vagelos College of Physicians and Surgeons; Department of Medicine; Division of Nephrology; Department of Biostatistics; Department of Pediatrics; Division of Pediatric Cardiology; Department of Psychiatry; Center for Law, Ethics, and Psychiatry; Division of Molecular Genetics; Center for Precision Medicine and Genomics; Department of Medical Humanities and Ethics; Division of Ethics; Mailman School of Public Health; Seymour, Paul, and Gloria Milstein Division of Cardiology; Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics