Publications

Maya Sabatello, Katherine E. McDonald. Invisible: People with Disability and (In)equity in Precision Medicine Research. American Journal of Bioethics (February, 2024).

Kadija Ferryman, Aaron J. Goldenberg & Maya Sabatello. Moving to Equity in the All of Us Research Program. American Journal of Bioethics (February, 2024).

Maya Sabatello, Suzanne Bakken, Wendy K. Chung, Elizabeth Cohn, Katherine D. Crew, Krzysztof Kiryluk, Rita Kukafka, Chunhua Weng, Paul S. Appelbaum. Return of polygenic risk scores in research: Stakeholders’ views on the eMERGE-IV Study. HGG Advances (February, 2024).

Green, S., Prainsack, B.  & Sabatello, M. The Roots of (In)equity in Precision Medicine: Gaps in the Discourse. Personalized Medicine. (December, 2023).

Klitzman R, Bezborodko E, Chung WK, Appelbaum PS.Impact of receiving genetic diagnoses on parents’ perceptions of their children with autism and intellectual disability. Journal of Autism and Developmental Disabilities, published online. (December, 2023)

Klitzman R, Bezborodko E, Chung WK, Appelbaum PS. Parents’ views of benefits and limitations of receiving genetic diagnoses for their offspring. Child: Care, Health & Development (January, 2024).

Lawrence RE, Appelbaum PS. Ethics in placebo-controlled, acute treatment trials in schizophrenia: two rival ethical frameworks. Schizophrenia Research. (January, 2024).

Sandra Soo-Jin Lee. "Chapter 27. Genetic". Keywords for Health Humanities, edited by Sari Altschuler, Jonathan M. Metzl and Priscilla Wald. New York University Press. (October, 2023.)

Maya Sabatello et al. Participant-guided development of bilingual genomic educational infographics for Electronic Medical Records and Genomics Phase IV study. A Scholarly Journal of Informatics in Health and Medicine. (October, 2023).

Elise Li Zheng and Sandra Soo-Jin Lee. The Epistemological Danger of Large Language Models. The American Journal of Bioethics. (October, 2023).

Daphne Oluwaseun Martschenko, Lucas J Matthews, Maya Sabatello. Social and Behavioral Genomics: What Does It Mean for Pediatrics? Journal of Pediatrics. (September, 2023).

Apolline Jungels, Lindsay Demers, Eric Ford, Blair K. Stevens, Maya Sabatello, Shoumita Dasgupta Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling. HGG Advances (August, 2023).

Emily Vasquez, Nicole Foti, Caitlin E, McMahon, Melanie Jeske, Michael Bentz, Stephanie Fullerton, Janet K Shim, Sandra Soo-Jin Lee. Rethinking Benefit and Responsibility in in the Context of Diversity: Perspectives from the Frontlines of Precision Medicine Research. Public Health Genomics. (July, 2023).

Hunter JE, et al. (CHARM study team, including Sandra Soo-Jin Lee and Mikaella Caruncho). Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population. Genetics in Medicine. (July, 2023).

Ellen Wright Clayton, Maureen E. Smith... Maya Sabatello, Ingrid A. Holm. Studying the impact of translational genomic research: Lessons from eMERGE. American Journal of Human Genetics. (June, 2023)

Deanne Dunbar Dolan, Mildred K. Cho & Sandra Soo-Jin Lee. Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research. American Journal of Bioethics. (June 2023)

Chessa Adsit-Morris, Rayheann NaDejda Collins, Sara Goering, James Karabin, Sandra Soo-Jin Lee & Jenny Reardon. Unbounding ELSI: The Ongoing Work of Centering Equity and Justice. American Journal of Bioethics. (June 2023).

Katelyn Esmonde, Stephen Roth, Alexis Walker. A social and ethical framework for providing health information obtained from combining genetics and fitness tracking data. Technology in Society, Volume 74. (June 2023).

John J. Connolly, Eta S. Berner . . . Maya Sabatello. 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. (May 2023).

Janet K. Shim, Nicole Foti, Emily Vasquez, Stephanie M. Fullerton, Michael Bentz, Melanie Jeske & Sandra Soo-Jin Lee. Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity. AJOB Empirical. (May, 2023)

Sara Green, Barbara Prainsack, Maya Sabatello. Precision medicine and the problem of structural injustice. Med Health Care Philos. 25:1–18. (May 2023).

Daphne Oluwaseun Martschenko, Shawneequa L. Callier, Nanibaa’ A. Garrison, Sandra Soo-Jin Lee, Patrick Turley, Michelle N. Meyer, Erik Parens. Wrestling with Public Input on an Ethical Analysis of Scientific Research. The Hastings Center Report. Volume 53, Issue S1. (April 2023).

Michelle N. Meyer, Paul S. Appelbaum, Daniel J. Benjamin, Shawneequa L. Callier, Nathaniel Comfort, Dalton Conley, Jeremy Freese, Nanibaa' A. Garrison, Evelynn M. Hammonds, K. Paige Harden, Sandra Soo-Jin Lee, Alicia R. Martin, Daphne Oluwaseun Martschenko, Benjamin M. Neale, Rohan H. C. Palmer, James Tabery, Eric Turkheimer, Patrick Turley, Erik Parens. Wrestling with Social and Behavioral Genomics: Risks, Potential Benefits, and Ethical Responsibility. The Hastings Center Report. Volume 53, Issue S1. (April 2023).

Sandra Soo-Jin Lee, Mikaella Caruncho, Wendy K. Chung, Josephine Johnston, Kathryn Tabb, Paul S. Appelbaum. Individualized Interventions for Rare Genetic Conditions and the Research-Treatment Spectrum: Stakeholder Perspectives. Genetics in Medicine. (March, 2023).

Neely Myers, Matthew Hutnyan, Tamara C. Daley . . . Tiana Y. Sepahpour. Pathways Through Early Psychosis Care for U.S. Youths From Ethnically and Racially Minoritized Groups: A Systematic Review. Psychiatric Services. (February, 2023).

Jessica Martucci, Yolanda Prado, Alan F. Rope . . . Sandra Soo-Jin Lee. An Examination of the Ethical and Legal Limits in Implementing “Traceback Testing” for Deceased Patients. Journal of Law, Medicine & Ethics. Volume 50, Issue 4. (March, 2023).

NASEM report (contributing author Sandra Soo-Jin Lee, PhD as member of Committee on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research). Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. (March, 2023).

eMERGE consortium (co-author Maya Sabatello). Returning integrated genomic risk and clinical recommendations: The eMERGE study. Genetics in Medicine. Volume 25, Issue 4. (April, 2023).

Hila Milo Rasouly, Olivia Balderes, Maddalena Marasa, Hilda Fernandez, Marissa Lipton, Fangming Lin, Ali G. Gharavi, Maya Sabatello. The impact of genetic education on referral of patients to genetic evaluation: Findings from a national survey of nephrologists. Genetics in Medicine. Volume 25, Issue 5. (February, 2023).

Jenny Reardon, Sandra Soo-Jin Lee, Sara Goering, Stephanie M. Fullerton, Mildred K. Cho, Aaron Panofsky, Evelynn M. Hammonds. Trustworthiness matters: Building equitable and ethical science. Cell. Volume 186, Issue 5. (January, 2023).

Maya Sabatello, Daphne O. Martschenko, Mildred K. Cho, Kyle B. Brothers. Data sharing and community-engaged research. Science, Volume 378, issue 6616 (October, 2022).

Sandra Soo-Jin Lee, Stephanie M Fullerton, Caitlin E McMahon, Michael Bentz, Aliya Saperstein, Melanie Jeske, Emily Vasquez, Nicole Foti, Larissa Saco, Janet K Shim. Targeting Representation: Interpreting Calls for Diversity in Precision Medicine Research. The Yale Journal of Biology and Medicine, Volume 95, 3 (September 30, 2022).

Katherine E. McDonald, Ariel E. Schwartz and Maya Sabatello Eligibility criteria in NIH-funded clinical trials: Can adults with intellectual disability get in? Disability and Health Journal. Volume 15, Issue 4. (October 2022).

Amy A. Lemke, Edward D. Esplin, Aaron J. Goldenberg, Claudia Gonzaga-Jauregui, Neil A. Hanchard, Julie Harris-Wai, Justin E. Ideozu, Rosario Isasi, Andrew P. Landstrom, Anya E.R. Prince, Erin Turbitt, Maya Sabatello, Samantha A. Schrier Vergano, Matthew R.G. Taylor, Joon-Ho Yu, Kyle B. Brothers, Nanibaa’ A. Garrison. Addressing underrepresentation in genomics research through community engagement. The American Journal of Human Genetics 109, 1563–1571 (September, 2022).

Shawna Benston, JD, MBE. Walking a Fine Germline: Synthesizing Public Opinion and Legal Precedent to Develop Policy Recommendations for Heritable Gene-Editing. Journal of Bioethical Inquiry, Volume 19, issue 3 (September, 2022).

Todd Lencz, PhD, Maya Sabatello, PhD, et al. Concerns about the use of polygenic embryo screening for psychiatric and cognitive traits. The Lancet Psychiatry, Volume 9, Issue 10, p. 838-844 (August 2022).

Shim, Janet K., Mike Bentz, Emily Vasquez, Melanie Jeske, Aliya Saperstein, Stephanie M. Fullerton, Nicole Foti, Caitlin E. McMahon, and Sandra Soo-Jin Lee. Strategies of Inclusion: The Tradeoffs of Pursuing “Baked in” Diversity Through Place-Based Recruitment. Social Science & Medicine (August 2022).

Dolan, Deanne Dunbar, Sandra Soo-Jin Lee, and Mildred K. Cho. Three decades of ethical, legal, and social implications research: Looking back to chart a path forward. Cell Genomics (2022): 100150.

Shim, Janet K., Mike Bentz, Emily Vasquez, Melanie Jeske, Aliya Saperstein, Stephanie M. Fullerton, Nicole Foti, Caitlin E. McMahon, and Sandra Soo-Jin Lee. (2022) Strategies of Inclusion: The Tradeoffs of Pursuing “Baked in” Diversity Through Place-Based Recruitment. Social Science & Medicine.

Maya Sabatello,  Wrongful Birth: AI-Tools for Moral Decisions in Clinical Care in the Absence of Disability Ethics, The American Journal of Bioethics, 22:7, 43-46, July 2022

Oliver J Bear Don’t Walk, IV, Harry Reyes Nieva, Sandra Soo-Jin Lee, Noémie Elhadad, A scoping review of ethics considerations in clinical natural language processing, JAMIA Open, Volume 5, Issue 2, July 2022

Sandra Soo-Jin Lee, Paul Appelbaum, Wendy K. Chung. Challenges and Potential Solutions to Health Disparities in Genomic Medicine. Cell, Volume 185, Issue 12, June 2022.

Lewis, A... Sandra Soo-Jin Lee, et al, Getting genetic ancestry right for science and society. Science, 376 (6590), April 2022. 

Alexis Walker, Diversity, Profit, Control: An Empirical Study of Industry Employees’ Views on Ethics in Private Sector Genomics. AJOB Empirical Bioethics, April 2022. 

Garofalo, D., Rosenblum, H., Zhang, Y., Chen, Y., Appelbaum, P., Sabatello, M., Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals. Genetics in Medicine (2021). https://doi.org/10.1016/j.gim.2021.11.015

Kauffman, Tia L...Sandra Soo-Jin Lee...et al. "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 (2021): 1194. 
https://www.mdpi.com/2075-4426/11/11/1194

Magavern, Emma F., Deepti Gurdasani, Fu L. Ng, and Sandra Soo‐Jin Lee. "Health equality, race and pharmacogenomics." British Journal of Clinical Pharmacology (2021). https://doi.org/10.1111/bcp.14983

Tichenor, M., Winters, J., Storeng, K.T., Walker, A., et al. Interrogating the World Bank’s role in global health knowledge production, governance, and finance. Global Health 17, 110 (2021). https://doi.org/10.1186/s12992-021-00761-w

Daphne O. Martschenko, Lucas J. Matthews, Maya Sabatello. Why should we care about social and behavioral genomics? Bioethics.net (September 23, 2021)

Vaimberg E, Demers L, Ford E, Sabatello M, Stevens B, Dasgupta S (2021) Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting. PLoS ONE 16(8): e0255722. https://doi.org/10.1371/journal.pone.0255722

Maya Sabatello, Audrey Chao, Beverly J Insel, Thomas Corbeil, Bruce G Link, Paul S Appelbaum, Psychiatric genetic essentialism and stigma in child custody proceedings: public views, Journal of Law and the Biosciences, Volume 8, Issue 2, July-December 2021, lsab026, https://doi.org/10.1093/jlb/lsab026

Alexis Walker, Vence L. Bonham, Angie Boyce, Ellen Wright Clayton, Debra Garcia, Stephanie Johnson, Oliver Laeyendecker, Michelle Lewis, Joseph B. Margolick, Debra Mathews, Michael J. Parker, Paul Spicer, Chloe L. Thio, Gail Geller, Jeffrey Kahn, Ethical issues in genetics and infectious diseases research: An interdisciplinary expert review, Ethics, Medicine and Public Health, Volume 18, 2021. https://doi.org/10.1016/j.jemep.2021.100684

Sandra Soo-Jin Lee (2021) Response to Open Peer Commentaries: Distinguishing the “Gift” from “Donation” as a Path toward Reciprocity and Relational Ethics, The American Journal of Bioethics,21:4, W1-W3, DOI: 10.1080/15265161.2021.1905102

Kraft, S.A., McMullen, C., Lindberg, N.M. ... Lee, S.S-J. et al.  Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol’s evolution.   Genet Med 22, 1094–1101 (2020). doi.org/10.1038/s41436-020-0763-z 

Sabatello M, Chen Y, Herrera C F, Brockhoff E, Austin J, Appelbaum P S: Teenagers and Precision Psychiatry: A Window of Opportunity. Public Health Genomics 2021. doi: 10.1159/000512475

Sandra Soo-Jin Lee (2020) Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine. The American Journal of Bioethics. DOI:10.1080/15265161.2020.1851813

Maya Sabatello, Mary Jackson Scroggins, Greta Goto, Alicia Santiago, Alma McCormick, Kimberly Jacoby Morris, Christina R. Daulton, Carla L. Easter & Gwen Darien (2020) Structural Racism in the COVID-19 Pandemic: Moving Forward. The American Journal of Bioethics, DOI: 10.1080/15265161.2020.1851808

Lee, Sandra Soo-Jin, Stephanie M. Fullerton, Aliya Saperstein, Janet Shim. (2019) Ethics of Inclusion: Cultivating Trust in Precision Medicine Research. Science. 364(6444): 941-42. DOI: 10.1126/science.aaw8299

Lee, Sandra Soo-Jin, Mildred K. Cho, Kraft, Stephanie A, Nina Varsava, Katherine Gillespie, Kelly E. Ormond, Benjamin S. Wilfond, David Magnus. (2018) “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research. Genetics in Medicine. PMID: 29887604

Kraft, Stephanie A, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond, Sandra Soo-Jin Lee. (2018) Beyond Consent: Building Trusting Relationships with Diverse Populations in Precision Medicine Research. American Journal of Bioethics. 18:4, 3-20, DOI: 10.1080/15265161.2018.1431322

Char, D. S., Lee, Sandra Soo-Jin., Magnus, D., Cho, M. (2018). Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically-ill children with heart disease. Genetics in Medicine doi:10.1038/gim.2018.25