ELSIcon2024: Reimagining the Benefits of Genomic Sciences

About the 6th ELSI Congress

Social, cultural, political, and economic developments around the world, along with the rapid technological transformation of genomic science, raise considerations for the ethical conduct and equitably beneficial implementation of genomic discovery. ELSIcon2024 focused on innovative, integrative research and scholarship on the potential benefits of genomics research while embracing a wide range of ELSI topics from across the broadening genomic landscape.

*Please note that the archive does not contain a small selection of presentations that were not recorded or for which permission to post was not granted. 

ELSIcon2024 Plenary Sessions

Monday ELSIcon2024 Presentations

Title:
ELSIcon2024: Genomics Through the Eyes of Others
Authors:
Corresponding Author: Ellen Wright Clayton, JD, MD (she/her/hers) – Vanderbilt University
Panelist: Zhijun Yin, PhD – Vanderbilt University Medical Center
Panelist: Jay Clayton, PhD (he/him/his) – Vanderbilt University
Panelist: Ayden Eilmus – Vanderbilt University
Title:
ELSIcon2024: Beneficial Engagement with Indigenous Peoples: A Survey of Tribal Research Governance in the United States
Authors:
Speaker: Ibrahim Garba, SJD (he/him/his) – University of Arizona
Title:
ELSIcon2024: Proper Parents: Poverty, Disability, Race, and Reproductive Control after the Eugenics Era
Authors:
Corresponding Author: Natalie Lira
Panelist: Jim Tabery, PhD – University of Utah
Panelist: Marie Kaniecki, MPH (she/her/hers) – University of California Los Angeles
Panelist: Jennifer James, PhD, MSW, MSSP – University of California, San Francisco
Title:
ELSIcon2024: Whose Science? Whose Knowledge? Equitable Partnerships and Diverse Teams for Just Genomic Research | ELSIcon2024
Authors:
Corresponding Author: Shawneequa Callier, MA JD – The George Washington University
Panelist: Lori B. Chibnik – Harvard University
Panelist: Elise Li Zheng, PhD – Columbia University
Panelist: Paul Meller, PhD (he/him/his) – Wellcome Trust
Title:
ELSIcon2024: Attitudes, Values, Preferences, Oh My! What Stated Preference Methods Can Bring to ELSI Research
Authors:
Speaker: Taylor Montgomery, MPH (she/her/hers) – Harvard University
Title:
ELSIcon2024: From Liminality to Liberation: FACTS as a Case Study for Addressing VUSs and Prioritizing Equity in Genomic Medicine
Authors:
Speaker: Jennifer K. Wagner, JD PhD (she/her/hers) – Pennsylvania State University
Title:
ELSIcon2024: Rethinking the Rule Against Testing Children for Adult-Onset Conditions: A New Zealand Case Study
Authors:
Speaker: Josephine Johnston, LLB, MBHL (she/her/hers) – University of Otago and The Hastings Center
Title:
ELSIcon2024: Minoritized Community Recommendations for Ethical Conduct of Social Epigenomic Research
Authors:
Speaker: Courtney Berrios, MSc, ScM, CGC (she/her/hers) – Children's Mercy Kansas City
Title:
ELSIcon2024: Incorporating Equity Considerations in Health Technology Assessment and Funding of Genome Medicine Technologies in Ontario, Canada
Authors:
Speaker: Wendy J. Ungar, MSc, PhD (she/her/hers) – The Hospital for Sick Children Research Institute (Canada)
Title:
ELSIcon2024: Analyzing Gamete Donation Screening Guidelines and Their Impact on Disability
Authors:
Speaker: Hannah V. Carpenter, LLB, MA (she/her/hers) – The University of Texas Medical Branch
Title:
ELSIcon2024: Exploring Ethical Dialogues in genomics research: A Qualitative Analysis of the Drama of DNA Method in South Africa.
Authors:
Speaker: Lebogang Montewa, MPH (she/her/hers) – University of Cape Town (South Africa)

Tuesday ELSIcon2024 Presentations

Title:
ELSIcon2024: Addressing Inequity in Genomics: Normative and Pragmatic Considerations in Using Distributional Cost-Effectiveness Analysis to Guide Decision Making
Authors:
Corresponding Author: Hadley Smith, PhD, MPSA – Harvard University
Panelist: Jeroen Jansen, PhD (he/him/his) – University of California, San Francisco
Panelist: Shawn Winsor, MHSc, PhDc (he/him/his) – University of Toronto (Canada)
Panelist: Shawneequa Callier, MA JD – The George Washington University
Title:
ELSIcon2024: Artificial Intelligence for Precision Medicine: How Close to ‘Personalized’ Can We Really Get?
Authors:
Corresponding Author: Carole Federico, MSc, PhD (she/her/hers) – Stanford University
Panelist: Kristin Kostick-Quenet – Baylor College of Medicine
Panelist: Nicole Martinez-Martin, JD, PhD (she/her/hers) – Stanford University
Panelist: Abdoul Jalil Djiberou Mahamadou, PhD (he/him/his) – Stanford University
Title:
ELSIcon2024: Digital Solutions to Deliver Genomic Medicine: Taking a Closer Look at What’s Under the Hood
Authors:
Corresponding Author: Catharine Wang, PhD, MSc (she/her/hers) – Boston University
Panelist: Deborah Cragun, PhD, MS – University of South Florida
Panelist: Angela Bradbury – University of Pennsylvania
Panelist: Anita Kinney, PhD – Rutgers University
Panelist: Wendy Kohlmann – University of Utah
Title:
ELSIcon2024: Clinician Perspectives on Polygenic Risk Scores in Child and Adolescent Psychiatry: Current Concerns and Future Utility
Authors:
Speaker: Page M. Trotter, MPH (she/her/hers) – Baylor College of Medicine
Title:
ELSIcon2024: Nothing About Us Without Us: Sharing Relevant Results with Communities that Provide Genomic Data
Authors:
Speaker: Sarah LeBaron von Baeyer, PhD (she/her/hers) – Variant Bio
Title:
ELSIcon2024: Anticipating Social and Interpersonal Influence of Polygenic Scores in Future Clinical Settings
Authors:
Speaker: Susan Persky, PhD (she/her/hers) – National Human Genome Research Institute, National Institutes of Health
Title:
ELSIcon2024: Global Perspectives on Implementing Clinical Genomic Sequencing Equitably, Effectively and Efficiently
Authors:
Corresponding Author: Deborah A. Marshall, PhD (she/her/hers) – The University of Calgary (Canada)
Panelist: Kathryn Phillips, PhD (she/her/hers) – University of California, San Francisco
Panelist: Kurt D. Christensen, PhD (he/him/his) – Harvard University
Panelist: Wendy J. Ungar, MSc, PhD (she/her/hers) – The Hospital for Sick Children Research Institute (Canada)
Panelist: James Buchanan, MA, DPhil (he/him/his) – Queen Mary University of London (United Kingdom)
Title:
ELSIcon2024: The Impact of Patient Race and Polygenic Risk Scores on Cancer Genetic Counselors’ Risk Assessment and Management in Breast Cancer Clinical Vignettes
Authors:
Speaker: Yifei Sylvia Lin, ScM, CGC – NIH/Johns Hopkins Genetic Counseling Graduate Program
Title:
ELSIcon2024: Impact of Returning Genomic Results Related to Adult-Onset Conditions to Pediatric Patients
Authors:
Speaker: Adam Buchanan, MS, MPH, CGC (he/him/his) – Geisinger College of Health Sciences

Wednesday ELSIcon2024 Presentations

Title:
ELSIcon2024: Identifying and Dismantling Systemic Ableism in Prenatal Screening
Authors:
Speaker: Stephanie Meredith, MA, DrPH (she/her/hers) - University of Kentucky
Title:
ELSIcon2024: Psychiatric Polygenic Risk Scores in Reproductive Decision-Making: Perspectives from Adults with Psychiatric Conditions
Authors:
Speaker: Ana Lucia Battaglino, MA (she/her/hers) - Harvard University
Title:
ELSIcon2024: Editing Future Generations, Centering Translational Justice: How Do Potential End Users Imagine the Benefits and Tradeoffs of Prenatal Genetic Therapies?
Authors:
Corresponding Author: Julia Brown, PhD (she/her/hers) - University of California, San Francisco
Panelist: Marsha Michie, PhD (she/her/hers) - Case Western Reserve University School of Medicine
Panelist: Megan Allyse - Mayo Clinic
Panelist: Shameka Poetry Thomas, PhD (she/her/hers) - The Ohio State University - College of Medicine
Title:
ELSIcon2024: Cross-Disciplinary Research and Public Engagement on Eugenic Sterilization: Mixed Methods, Data Visualization, and Cross-State Comparisons
Authors:
Moderator: Nicole Novak, PhD, MSc (she/her/hers) - University of Iowa
Panelist: Heather Dron, PhD, MPH (she/her/hers) - University of California, Los Angeles
Panelist: Kate O'Connor, MPH, MA (they/she) - University of Michigan
Panelist: Alexandra Stern (she/her/hers) - University of California, Los Angeles
Title:
ELSIcon2024: Experiential Ethics Training for Genomic Researchers
Authors:
Corresponding Author: Quinn Waeiss, PhD (they/them/theirs) - Stanford University
Panelist: Ariadne Nichol, BA - Stanford Center for Biomedical Ethics
Panelist: David Magnus - Stanfor Center for Biomedical Ethics
Panelist: Katie Shilton, PhD - University of Maryland
Panelist: Michael Bernstein - Stanford University
Title:
ELSIcon2024: Increasing Diversity in Genetic Databases: Lessons Learned from 20 Years of Slow Progress
Authors:
Speaker: Robert I. Field, JD, MPH, PhD - Drexel University
Title:
ELSIcon2024: ELSI of Implementing Clinical Genetic Testing in Kidney Disease and Transplantation Care
Authors:
Speaker: Tamar Schiff, MD (she/her/hers) - NYU Grossman School of Medicine
Title:
ELSIcon2024: The Failed Protection of Proposed Changes to HIPAA
Authors:
Speaker: Ellen Wright Clayton, JD, MD (she/her/hers) - Vanderbilt University
Title:
ELSIcon2024: Contemporary bioethics and policy changes for children with profound disabilities: Cardiac Surgery in Children with Trisomy 18
Authors:
Corresponding Author: Benjamin Wilfond, MD (he/him/his) - Seattle Children's Research Institute
Panelist: Jennifer Castillo, JD - Trisomy Collaborative
Panelist: John Carey, MD, MPH, FAAP, FACMGG (he/him/his) - University of Utah
Panelist: Mark Mecurio - Yale University
Panelist: Katherine Kosiv, MD (she/her/hers) - Yale University
Title:
ELSIcon2024: Weighing the Benefits, Harms, and Limitations of Genetic Testing in the Workplace
Authors:
Corresponding Author: Scott Roberts, PhD (he/him/his) - University of Michigan
Moderator: Wendy Uhlmann - University of Michigan
Panelist: Drew Blasco, PhD (she/her/hers) - University of Nevada, Las Vegas
Panelist: Elizabeth J. Charnysh, MS, CGC (she/her/hers) - The Jackson Laboratory for Genomic Medicine
Panelist: Anya Prince - University of Iowa
Title:
ELSIcon2024: The Legal Weaponization of Racialized DNA
Authors:
Speaker: Jonathan Kahn, JD, PhD (he/him/him) - Northeastern University
Title:
ELSIcon2024: Re-envisioning Translational Equity in Pediatric Gene Therapy Research
Authors:
Speaker: Aaron Goldenberg, PhD, MPH (he/him/his) - Case Western Reserve University School of Medicine
Title:
ELSIcon2024: Racial Politics and Health Equity in Genome-Editing Therapeutics
Authors:
Co-author: Santiago J. Molina, PhD (he/they) - Northwestern University
Speaker: Melissa Creary, PhD, MPH
Title:
ELSIcon2024: Reporting Practices for Sexual and Gender Minority Demographic Information in NIH-Supported Genomic Studies
Authors:
Speaker: Zo Bly, BA (they/them/theirs) - National Human Genome Research Institute, National Institutes of Health
Title:
ELSIcon2024: Assessing the Impacts of the Major Human Genome Editing (HGE) Reports on the Governance Landscape
Authors:
Gail E. Henderson, PhD (she/her/hers) - University of North Carolina, Chapel Hill
Title:
ELSIcon2024: Key Stakeholders' Moral Attitudes on Somatic Gene Editing for Inherited Cardiomyopathy: A Qualitative Interview Study
Authors:
Speaker: Jannieke Simons, MA (she/her/hers) - University Medical Center Utrecht (Netherlands)
Title:
ELSIcon2024: From Person-Centered to Family-Centered: Navigating Practical and Ethical Issues in Health System-Led Contact for Cascade Screening
Authors:
Moderator: Emily Bonkowski, ScM, CGC (she/her/hers) - St. Jude Children's Research Hospital
Panelist: Leila Jamal, ScM, PhD, LGC (she/her/hers) - National Cancer Institute & National Institutes of Health Bioethics Department
Panelist: Katherine Bonini, MS, MA, CGC (she/her/hers) - Mount Sinai Hospital
Panelist: Nora B. Henrikson - Kaiser Permanente Washington
Title:
ELSIcon2024: The ELSI of Engagement: Benefits and Challenges to Achieving a Just Genomics
Authors:
Corresponding Author: Meghan Halley, PhD, MPH - Stanford Center for Biomedical Ethics
Panelist: Ryan Fischer - Foundation for Angelman Syndrome Therapeutics
Panelist: Daphne Martschenko, PhD - Stanford University
Panelist: Jennifer L. Young, PhD, MA, MS (she/her/hers) - Northwestern University
Panelist: Audrey Stephannie Maghiro, AB (she/her/hers) - WUSM/Undiagnosed Diseases Network at Harvard Medical School

ELSIcon2024 Posters

Title:
Analysis of the Impact of NHGRI’s Centers for Excellence in ELSI Research (CEER) Program
Authors:
Sarah Anstice, B.A. - National Human Genome Research Institute, National Institute of Health
Title:
Connecting with the Ethical, Legal and Social Implications (ELSI) Research Program - NHGRI
Authors:
Lawrence Brody, Ph.D.
Rene Sterling, Ph.D., M.H.A.
Nicole Lockhart, Ph.D.
Zo Bly, B.A.
Sarah Anstice, B.A.
Jesus Aguilar Pinzon, B.A.
Title:
What Counts as Sex/Gender and Who Decides? Policy Analysis of US Legal Gender Marker Changes on Identification Documents
Authors:
Emerson Dusic, MPH – PhD Candidate, University of Washington
Title:
Stakeholder Concerns About Ethical, Legal, and Social Implications of the Genetics of Post-Traumatic Stress Disorder (PTSD)
Authors:
Brandy M. Fox, MSHCE, PhD – Postdoctoral Research Fellow, Stanford University
Title:
Lynch Syndrome and Decision-Making for Risk-Reducing Oophorectomy: Considerations Beyond Cancer
Authors:
Jazmine Gabriel, PhD, MS, CGC – Postdoctoral fellow, Geisinger College of Health Sciences
Title:
Lynch Syndrome and risk-reducing gynecologic surgery: gene-specific surgical uptake and patient decision-making experiences
Authors:
Jazmine Gabriel, PhD, MS, CGC – Postdoctoral fellow, Geisinger College of Health Sciences
Title:
Anticipating ELSI of the NIH Human Virome Program
Authors:
Gail E. Henderson, PhD - University of North Carolina - Chapel Hill
Title:
What motivates adopted individuals to pursue elective genetic testing? Findings from the Sanford Chip program
Authors:
Madison R. Hickingbotham, MS – Senior Research Assistant, Harvard University
Title:
Implementing a DNA strategy to reunify Ukrainian children separated from their families
Authors:
Sara Huston, MS – Research Assistant Professor, Lurie Children's
Title:
Sociogenomic Friction in the Landscape of Neurodiversity
Authors:
Matthew Kucmanic, MA, MPH - Graduate Student, University of Iowa
Title:
Ethical Considerations in Measuring Genetic and Genomic Competence among Nurses: Insights from Survey Instruments
Authors:
Mari Laaksonen, MHS PhD student – PhD student Senior Lecturer, Tampere University (Finland)
Title:
Decision Stability among Adolescents and Young Adults Making Choices about Learning Genomic Research Results
Authors:
Michelle McGowan, PhD – Professor of Biomedical Ethics, Mayo Clinic
Title:
Democratization and Cloud-Based Genomic Data Sharing: Views of Platform Developers and Early Adopters
Authors:
Sarah C. Nelson, MPH, PhD - Senior Research Scientist, University of Washington; Jacklyn Dahlquist, University of Washington; Stephanie Malia Fullerton, University of Washington
Title:
Understanding Preferences for Genetic Testing in Minoritized Populations: A Review of Heterogeneity Analyses in Stated Preference Research
Authors:
Taylor Montgomery, MPH - Senior Research Assistant, Harvard University
Title:
Experiences of Black Pregnant People Offered Prenatal Diagnosis in the Setting of Fetal Anomalies: A Qualitative Study
Authors:
Asha N. Talati, MD - Assistant Professor, Maternal Fetal Medicine & Clinical Genetics, University of North Carolina at Chapel Hill
Title:
How Judges Decide: The Impact of Bio-Behavioral Sciences on Legal Decision-Making
Authors:
Mia A. Thomaidou, PhD - Post-doctoral Research Fellow, Rutgers University
Title:
Promoting Diverse Recruitment in Genomic Research: The Impact of Community Partnerships in the BabySeq Project
Authors:
Sheyenne Walmsley, MS, CGC – Genetic Counselor & Project Manager , Mass General Brigham
Title:
Reproductive decision-making in people with transfusion-dependent-thalassemia
Authors:
Karolus Wangi, MS BSN RN – PhD Student & Research Assistant, Pennsylvania State University
Title:
Cross-Sectional Analysis of U.S. Health Insurance Payer Policies for Pharmacogenomic and Pharmacodynamic Testing for Psychiatric Therapies
Authors:
Sandra Yankah, PhD, Duke Margolis Center for Health Policy; Rachele Hendricks-Sturrup, Duke Margolis Center for Health Policy; Maryam Nafie, Duke Margolis Center for Health Policy; Christine Lu, The University of Sydney
Title:
Engaging Multiracial Community in Genomics Research: What Does it Mean?
Authors:
Jennifer L. Young, PhD, MA, MS - Assistant Professor, Northwestern University
Title:
Advancing Restorative Justice through Clinical Genomics: A Multi-Stakeholder Framework to Ethically Integrate Gene Therapy for Sickle Cell Disease
Authors:
Tessa Youngner, MS, Harvard Medical School Center for Bioethics; Hadley Smith, Harvard Medical School and Harvard Pilgrim Health Care Institute

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ELSI Congresses

  • The biennial ELSI Congress provides a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal, and social implications of genetic and genomic research and its translation into clinical care. This page is an archive of recorded presentations that took place at the most recent ELSI Congresses, which were co-organized by the Division of Ethics at Columbia University and the Stanford Center for Biomedical Ethics with support from the National Human Genome Research Institute.

ELSI Congresses