Publications

Welcome to the publications archive of the Division of Ethics. This page showcases the extensive scholarly contributions of our faculty, affiliate faculty, and research associates, highlighting their dedication to advancing knowledge in critical areas of medical ethics. Our research is highly interdisciplinary and spans a wide range of topics, including gene sequencing and genetic testing, machine learning in medical decision-making, big data and data privacy within health systems, and the pursuit of equitable healthcare access. To learn more about the work and expertise of our faculty, affiliate faculty, and research associates, please visit the about us page.

2025

Janet K. Shim, Caitlin McMahon, Larissa Saco, Michael Bentz, Foti N, Sandra Soo-Jin Lee. 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. 2025;9(1):e78. (April 2025)
Josephine Johnston, Kathryn Tabb, Danielle Pacia, Sandra Soo-Jin Lee, Wendy K. Chung, Paul S Appelbaum. Understanding individualised genetic interventions as research-treatment hybrids. Journal of Medical Ethics. 51:jme-2023-109729. (April 2025)
Magdalena Eitenberger, Barbara Prainsack, & Maya Sabatello. Consent at the Ease of a Click? Technosolutionist Fixes Cannot Replace Human Relations and Solidarity. The American Journal of Bioethics, 25(4), 121–123. (April 2025)
Audrey E Chao, Sarath Babu Krishna Murthy, Maya Sabatello. Views of judges and potential jurors on responsibility for behavior in tort litigation in the genomic era . Journal of Law and the Biosciences, Volume 12, Issue 1. (March 2025).
Natalie J. Strohmayer, Itzel A. Camarillo, Hyunmi Choi, Ruth Ottman. Information on epilepsy genetics available online for people with epilepsy and their families. Epilepsy Behavior 166:110361. (March 2025)
Lucas J. Matthews, Daphne O. Martschenko, Colby Lewis, Maya Sabatello. Intersectionality in a Sociogenomic World: How do Race, Disability, Socioeconomic Status, and Polygenic Prediction Interact to Impact Perceptions of Educational Trajectories? Genetics in Medicine (February 2025)
Magdalena Eitenberger, Mika Baugh, Katherine E. McDonald, & Maya Sabatello. Beyond Individual Responsibility: Group Harms in Genomic (Data-Centric) Research Ethics Require Structural, Justice-Oriented Solutions. The American Journal of Bioethics, 25(2), 77–79. (January 2025)
Mazdak M Bradberry, Paul S Appelbaum, Natalie Gukasyan. Informed consent in psychedelic-assisted therapy, in Majić T (ed.) Psychedelic Harm Reduction. Current Topics in Behavioral Neuroscience series. New York, Springer Publishing. (January 2025)
Robert Klitzman, Ekaterina Bezborodko, Wendy K Chung, Paul S Appelbaum. Impact of receiving genetic diagnoses on parents’ perceptions of their children with autism and intellectual disability. Journal of Autism and Developmental Disabilities, 55:284–296 (January 2025).
Betina Idnay, Zihan Xu (…) Sandra Soo-Jin Lee, et al. Environment scan of generative AI infrastructure for clinical and translational science. NPJ Health Systems. 2, 4 (January 2025)
Ravi Savarirayan, Julie Hoover-Fong (…) Margaret Menzel et al. International consensus guidelines on the implementation and monitoring of vosoritide therapy in individuals with achondroplasia. Nature Reviews Endocrinology (January 2025)
Emily McNeill, Hetty Cunningham, and Maya Sabatello. Transitional Justice — A Politico-Legal Approach to Health Equity. The New England Journal of Medicine (January 2025)
Magdalena Eitenberger, Mika Baugh, Katherine E. McDonald, & Maya Sabatello. Beyond Individual Responsibility: Group Harms in Genomic (Data-Centric) Research Ethics Require Structural, Justice-Oriented Solutions. The American Journal of Bioethics, 25 (2), 77–79. (January 2025)

2024

Lucas J. Matthews, James Tabery, Eric Turkheimer. How to Diagnose Abhorrent Science. Hastings Center Report, 54(6):18-29 (December 2024)
John B. Wetmore, Sophia Rodriguez, (…) Ruth Ottman. Designing and implementing the IDEAL Study: A randomized clinical trial of APOE genotype disclosure for late-onset Alzheimer's disease in an urban Latino population. Alzheimer's & Dementia: Translational Research & Clinical Interventions (December 2024)
Itzel A Camarillo, Sylwia Misiewicz, Karolynn Siegel, Ruth Ottman. The concept of "control" in people with epilepsy: A qualitative study. Epilepsy & Behavior 2024;161:110059. (December 2024)
Churl-Su Kwon, Ali Rafati, Ruth Ottman, et al. Psychiatric comorbidities in persons with epilepsy compared with persons without epilepsy: a systematic review and meta-analysis. JAMA Neurology. (December 2024)
Lucas J. Matthews. The Geneticization of Education and Its Bioethical Implications. Cambridge Quarterly of Healthcare Ethics. (November 2024)
James Karabin, Chessa Adsit-Morris, Sandra Soo-Jin Lee, Stephanie M. Fullerton, Mildred K. Cho, and Jenny Reardon. 2024. “A Conjunctural Analysis of the Origins of ‘Embedded ELSI’ in U.S. Genomic Medicine.” Journal of Responsible Innovation 11 (1), (October 2024).
Lesley A. Sharp, Garet Lahvis, Amy Robinson-Junker, and Larry Carbone. 2024. “Human-NonHuman Interactions in the Animal Laboratory.” In The Routledge International Handbook of Human-Animal Interactions and Anthrozoology, Chapter 40. New York: Routledge University Press.
Lesley A. Sharp. “The Invisibility of the Aging Laboratory Animal.” In More than Human Aging: Animals, Robots, and Care in Later Life, edited by Cristina Douglas, Andrew Whitehouse, and Arnar Ánarson. New Brunswick: Rutgers University Press.
James Karabin, Chessa Adsit-Morris, Sandra Soo-Jin Lee, Stephanie M. Fullerton, Mildred K. Cho, and Jenny Reardon. 2024. “A Conjunctural Analysis of the Origins of ‘Embedded ELSI’ in U.S. Genomic Medicine.” Journal of Responsible Innovation 11 (1), (October 2024).
Lesley A. Sharp, Garet Lahvis, Amy Robinson-Junker, and Larry Carbone. 2024. “Human-NonHuman Interactions in the Animal Laboratory.” In The Routledge International Handbook of Human-Animal Interactions and Anthrozoology, Chapter 40. New York: Routledge University Press.
Lesley A. Sharp. “The Invisibility of the Aging Laboratory Animal.” In More than Human Aging: Animals, Robots, and Care in Later Life, edited by Cristina Douglas, Andrew Whitehouse, and Arnar Ánarson. New Brunswick: Rutgers University Press.
Melanie Jeske, Aliya Saperstein, Sandra Soo-Jin Lee, Janet K Shim. Marginalized measures: The harmonization of diversity in precision medicine research. Social Studies of Science. (October 2024)
Hilda E. Fernandez, Marissa Lipton, Olivia Balderes, Fangming Lin, Maddalena Marasa, Hila Milo Rasouly & Maya Sabatello. Pediatric nephrologists’ perspectives and clinical practices related to genetic testing and education. Pediatric Nephrology (October 2024)
Felicia Russo, Debanjana Chatterjee, Natalia DeMaria, Michelle E Florido, Maddalena Marasa, Maya Sabatello, Julia Wynn, Hila Milo Rasouly. Negative results from DNA-based population screening for adult-onset diseases: the recipients' experience. Journal of Community Genetics. (October 2024)
Colin A Ellis, Karen L Oliver, Rebekah V Harris, Ruth Ottman, Ingrid E Scheffer, Heather C Mefford, Michael P Epstein, Samuel F Berkovic, Melanie Bahlo. Inflation of polygenic risk scores caused by sample overlap and relatedness: Examples of a major risk of bias. American Journal Human Genetics 2024; 111:1805-1809 (October 2024)
Evelyn Tran, María Cabán, Alicia Meng, John Wetmore, Ruth Ottman & Karolynn Siegel. Beliefs about the causes of Alzheimer’s disease among Latinos. J Community Health (October 2024)
Elise Li Zheng, Weina Jin, Ghassan Hamarneh, Sandra Soo-Jin Lee. From Human-in-the-Loop to Human-in-Power. The American Journal of Bioethics, 24(9), 84–86. (September 2024)
Sandra Soo-Jin Lee. What and for whom is bioethics? The American Journal of Bioethics, 24(9), 6–8. (September 2024)
Robyn Weiss, Hila Milo Rasouly, Maddalena Marasa, Hilda Fernandez,, Fangming Li & Maya Sabatello. Nephrologists’ views on a workflow for returning genetic results to research participants. Kidney International Reports. (September 2024)
Kevin Todd Mintz & Maya Sabatello. REDI in bioethics cannot be achieved without the promotion of anti-ableism. The American Journal of Bioethics, 24(10), 32–34. (September 2024).
Paul S. Appelbaum. Preventing age discrimination against older workers. Public Health Post. (September 2024)
Ahmed Elhussein, Ulugbek Baymuradov, NYGC ALS Consortium, Noémie Elhadad, Karthik Natarajan & Gamze Gürsoy. A framework for sharing of clinical and genetic data for precision medicine applications. Nature Medicine. (September 2024).
Silvana Galderisi, Paul S. Appelbaum, et al. Ethical challenges in contemporary psychiatry: An overview and an appraisal of possible strategies and research needs. World Psychiatry, 23, 364–386. (September 2024)
Itzel A. Camarilloa, Sylwia Misiewiczc, Karolynn Siegele, Ruth Ottman. The concept of “control” in people with epilepsy: A qualitative study. Epilepsy & Behavior, 161. (September 2024)
Elise Li Zheng, "Technological Practices of Multiple Bodies: Self-tracking in an Overworking Culture", in: "Simone Arnaldi, Stefano Crabu, Assunta Viteritti, "Bodies and Technoscience. Practices, Imaginaries and Materiality" in: "Biblioteca della società aperta. Studi e ricerche", Edizioni Università di Trieste, Trieste, 2024, pp. 203-224.
Meghna S. Trivedi, Haley Manley, Haeseung Yi, Thomas Silverman, Wendy K. Chung, Paul S. Appelbaum, Rebecca Starck, Isaac Schecter, Rita Kukafka & Katherine D. Crew. Pilot study of a decision aid on BRCA1/2 genetic testing among Orthodox Jewish women. Familial Cancer. 2024 Apr 12. E-pub ahead of print.
Ragy R Girgis, Hannah Hesson, Gary Brucato, Jeffrey A Lieberman, Paul S. Appelbaum, J John Mann. Changes in rates of suicide by mass shooters, 1980-2019. Archives of Suicide Research (July 2024).
Josephine Johnston, Kathryn Tabb, Danielle Pacia, Sandra Soo-Jin Lee, Wendy K Chung, Paul S. Appelbaum. Understanding individualized genetic interventions as research-treatment hybrids. BMJ Journal of Medical Ethics (July 2024).
Lucas J. Matthews, Zhijun Zhang, Daphne O. Martschenko. Schoolhouse risk: Can we mitigate the polygenic Pygmalion effect? Acta Psychologica, Volume 248 (July 2024).
Josephine Johnston, Kathryn Tabb, Danielle Pacia, Sandra Soo-Jin Lee, Wendy K Chung, Paul S. Appelbaum.Understanding individualised genetic interventions as research-treatment hybrids. Journal of Medical Ethics, Online First (June 2024).
Nina V. Kraguljac, Debra P. Bruns, Paul S. Appelbaum et al. Post-Roe v. Wade psychiatry: legal, clinical, and ethical challenges in psychiatry under abortion bans. Lancet Psychiatry, Online First (May 2024).
Deanne Dunbar Dolan, Mildred K. Cho, Sandra Soo-Jin Lee. Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine. AJOB Empirical Bioethics, 15(2), 87–92. (June 2024).
Deanne Dunbar Dolan, Rachel Lee, Mildred K. Cho, Sandra Soo-Jin Lee. Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals. AJOB Empirical Bioethics, 15(2), 147–153. (June 2024).
Paul S. Appelbaum. Informed consent to psychedelic treatment—a work in progress (editorial). JAMA Psychiatry, 81(6):543-544. (June 2024).
Linying Zhang, Lauren R. Richter, Yixin Wang, Anna Ostropolets, Noémie Elhadad, David M. Blei, George Hripcsak. Causal fairness assessment of treatment allocation with electronic health records. Journal of Biomedical Informatics, Volume 155, (May 2024)
Colin A. Ellis, Danni Tu, Karen L. Oliver, Heather C. Mefford, W Allen Hauser, Jeffrey Buchhalter, Michael P Epstein, Quy Cao; EPGP Consortium; Epi4K Consortium; Samuel F Berkovic, Ruth Ottman. Familial aggregation of seizure outcomes in four familial epilepsy cohorts. Epilepsia, (May 2024)
Edward Jacobs, Brian D. Earp, Paul S. Appelbaum et al. The Hopkins-Oxford Psychedelics Ethics (HOPE) Working Group Consensus Statement. American Journal of Bioethics, (May 2024).
Stephanie A. Rolin, Deirdre Caffrey, Megan G. Flores, Leah G. Pope, Jennifer Mootz, Iruma Bello, Ilana Nossel, Michael T. Compton, Barbara Stanley, Milton Wainberg, Lisa B. Dixon, Paul S. Appelbaum. An open pilot trial of a behavioral intervention to reduce violence by young adults with early psychosis receiving treatment in an early intervention services setting: a protocol. Early Intervention in Psychiatry, (May 2024)
Deanne Dunbar Dolan, Rachel H. Lee, Mildred K. Cho & Sandra Soo-Jin Lee. Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals. AJOB Empirical Bioethics, 1–7, (May 2024).
Ebony B. Madden, Lucia A. Hindorff, Vence L. Bonham, Tabia Henry Akintobi, Esteban G. Burchard, Kellan E. Baker, Rene L. Begay, John D. Carpten, Nancy J. Cox, Valentina Di Francesco, Denise A. Dillard, Faith E. Fletcher, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Catherine M. Hammack-Aviran, Vanessa Y. Hiratsuka, James E. K. Hildreth, Carol R. Horowitz, Chanita A. Hughes Halbert, Michael Inouye, Amber Jackson, Latrice G. Landry, Rick A. Kittles, Jeff T. Leek, Nita A. Limdi, Nicole C. Lockhart, Elizabeth O. Ofili, Eliseo J. Pérez-Stable, Maya Sabatello, Loren Saulsberry, Lorjetta E. Schools, Jennifer L. Troyer, Benjamin S. Wilfond, Genevieve L. Wojcik, Judy H. Cho, Sandra Soo-Jin Lee & Eric D. Green. Advancing Genomics to Improve Health Equity. Nature Genetics (April 2024).
Robert Klitzman, Ekaterina Bezborodko, Wendy K. Chung, Paul S. Appelbaum. Views of genetic testing for autism among autism self-advocates: a qualitative study. American Journal of Bioethics—Empirical Bioethics, (April 2024)
Anna C.F. Lewis, Rex L. Chisholm, John J. Connolly, Edward D. Esplin, Joe Glessner, Adam Gordon, Robert C. Green, Hakon Hakonarson, Margaret Harr, Ingrid A. Holm, Gail P. Jarvik, Elizabeth Karlson, Eimear E. Kenny, Leah Kottyan, Niall Lennon, Jodell E. Linder, Yuan Luo, Lisa J. Martin, Emma Perez, Megan J. Puckelwartz, Laura J. Rasmussen-Torvik, Maya Sabatello, Richard R. Sharp, Jordan W. Smoller, Rene Sterling, Shannon Terek, Wei-Qi Wei, Stephanie M. Fullerton. Managing differential performance of polygenic risk scores across groups: Real-world experience of the eMERGE Network. The American Journal of Human Genetics, (April 2024)
Mika Baugh & Maya Sabatello. Whether Whole Eye Transplant is a Benefit or Harm Depends on More Than the Observer. The American Journal of Bioethics (April 2024), 24(5): 87–90.
Matthew S. Lebowitz, Kathryn Tabb, Paul S. Appelbaum. Asymmetric genetic attributions for one’s own prosocial versus antisocial behavior. Journal of Social Psychology (April 2024), 164(3): 273-279.
Haeseung Yi, Meghna S Trivedi, Katherine D Crew, Isaac Schechter, Paul S. Appelbaum, Wendy K Chung , John P Allegrante, Rita Kukafka. Understanding social, cultural, and religious factors influencing medical decision-making on BRCA1/2 genetic testing in the Orthodox Jewish community. Public Health Genomics (April 2024), 27:57–67.
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. & Maya Sabatello. The Roots of (In)equity in Precision Medicine: Gaps in the Discourse. Personalized Medicine. (December, 2023).
Klitzman R, Bezborodko E, Chung WK, Paul S. Appelbaum.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, Paul S. Appelbaum. Parents’ views of benefits and limitations of receiving genetic diagnoses for their offspring. Child: Care, Health & Development (January, 2024).
Lawrence RE, Paul S. Appelbaum. Ethics in placebo-controlled, acute treatment trials in schizophrenia: two rival ethical frameworks. Schizophrenia Research. (January, 2024).

2023

McMahon, CE. Foti N, Jeske M, Britton WR, Fullerton SM, Shim JK, & Lee SSJ. Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers, AJOB Empirical Bioethics. (November, 2023)
Jabloner A, Walker A. The Pitfalls of Genomic Diversity. The Hastings Center Report, (November 2023).
Smith WR, Appelbaum PS, Lebowitz MS, Gülöksüz S, Calkins ME Kohler CG, Gur RE, Barzilay R. The ethics of risk prediction for psychosis and suicide attempt in youth mental health. Journal of Pediatrics. (November 2023).
Lebowitz MS, Tabb K, Appelbaum PS. Asymmetric causal attributions to environmental influences for prosocial versus antisocial behavior. Social Cognition (October 2023).
Klitzman R, Bezborodko E, Chung WK, Appelbaum PS. Receiving de novo genetic diagnoses for autism with intellectual disability: parents’ views of impacts on families’ reproductive decisions. Journal of Community Genetics. (October 2023).
Colby Lewis, Jack Huebner, George Hripcsak, & Maya Sabatello. Underrepresentation of blind and deaf participants in the All of Us Research Program. Nature Medicine. (October, 2023).
Michael Bentz, Aliya Saperstein, Stephanie M. Fullerton, Janet K. Shim, Sandra Soo-Jin Lee. Conflating race and ancestry: Tracing decision points about population descriptors over the precision medicine research life course. HGG Advances. (October, 2023).
Maya Sabatello et al. The need for an intersectionality framework in precision medicine research. American Journal of Human Genetics. (October, 2023).
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).
Trujillo S, Wetmore JB, Camarillo IA, Misiewicz S, May H, Choi H, Siegel K, Chung WK, Phelan JC, Yang LH, Leu CS, Bergner AL, Ottman R. Knowledge and beliefs about epilepsy genetics among Hispanic and non-Hispanic patients. Epilepsia (September 2023).
Choi H, Wetmore JB, Camarillo IA, Misiewicz S, Siegel K, Chung WK, Leu CS, Phelan JC, Yang LH, Ottman R. Association of antiseizure medication adherence with illness perceptions in adults with epilepsy. Epilepsy & Behavior (September 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).

2022

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.

2021

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
Maya Sabatello, Mary Jackson Scroggins, Greta Goto, Alicia Santiago, Alma McCormick, Kimberly Jacoby Morris, Christina R. Daulton, Carla L. Easter & Gwen Darien (2021) An Open Dialogue on Health Disparities and Structural Racism: Response to Open Peer Commentaries, The American Journal of Bioethics, DOI: 10.1080/15265161.2021.1895365
Gal, Dana B. MD; Deuitch, Natalie MS, CGC; Lee, Sandra Soo Jin PhD; Simon, Rosalie Tang NP; Char, Danton S. MD. Parental Attitudes Toward Clinical Genomic Sequencing in Children With Critical Cardiac Disease. Pediatric Critical Care Medicine Online First, Feb 12, 2021.Doi: 10.1097/PCC.0000000000002669
Maya Sabatello, Beverly J. Insel, Bruce G. Link, Jo C. Phelan and Paul S. Appelbaum. The Psychiatric Genetic Data of Children in Proceedings to Terminate Parental Rights. Journal of the American Academy of Psychiatry and the Law Online February 2021, JAAPL.200066-20.
Zhou, A., Sabatello, M., Eyal, G., Lee, S.S-J., et al. Is precision medicine relevant in the age of COVID-19?. Genet Med (2021). doi.org/10.1038/s41436-020-01088-4

2020

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