Skip to main content



Icon Legend
This session is not in your schedule.
This session is in your schedule. Click again to remove it.

Full Schedule

Register for ELSIcon2024 to begin creating your personalized conference schedule.

Full Schedule

  • Monday, June 10, 2024
  • 7:00 AM – 8:30 AM ET
    Registration
  • 7:30 AM – 8:30 AM ET
    Breakfast
  • 8:30 AM – 8:50 AM ET
    Welcome and Plenary 1

    Co-Chair: Sandra Soo-Jin Lee, PhD – Columbia University

  • 8:50 AM – 10:00 AM ET
    Welcome and Plenary 1

    Plenary Speaker: Maui Hudson – University of Waikato, Te Pua Wananga ki te Ao

  • 10:00 AM – 10:30 AM ET
    Break
  • 10:30 AM – 12:00 PM ET
    A1 - Identifying and Combating the Threat and Enhancing the Promise of Social and Behavioral Genomics

    Corresponding Author: Anya Prince – University of Iowa

    Speaker: Jean Cadigan, PhD

    Panelist: Lucas J. Matthews, PHD – Columbia University

    Panelist: Kriste Kuczynski – University of North Carolina - Chapel Hill

    Panelist: Daphne Martschenko, PhD – Stanford University

  • 10:30 AM – 12:00 PM ET
    A2 - Genomics Through the Eyes of Others

    Corresponding Author: Ellen Wright Clayton, JD, MD – Vanderbilt University

    Panelist: Ayden Eilmus – Vanderbilt University

    Panelist: Zhijun Yin, PhD – Vanderbilt University Medical Center

    Panelist: Jay Clayton, PhD – Vanderbilt University

  • 10:30 AM – 12:00 PM ET
    A3 - Paper Session A3
    AI and machine learning
  • 10:30 AM – 12:00 PM ET
    A4 - Paper Session A4
    Indigenous communities collaboration
  • 12:00 PM – 1:30 PM ET
    Lunch
  • 12:00 PM – 1:30 PM ET
    Trainee Lunch
  • 12:30 PM – 1:30 PM ET
    Virtual Lunch: Perspectives on Community Partnered ELSI Research
  • 1:30 PM – 3:00 PM ET
    B1 - Proper Parents: Poverty, Disability, Race, and Reproductive Control after the Eugenics Era

    Corresponding Author: Natalie Lira

    Panelist: Jim Tabery, PhD – University of Utah

    Panelist: Marie Kaniecki, MPH – University of California Los Angeles

    Panelist: Jennifer James, PhD, MSW, MSSP – University of California, San Francisco

  • 1:30 PM – 3:00 PM ET
    B2 - "'Whose Science? Whose Knowledge?’* Equitable Partnerships and Diverse Teams for Just Genomic Research"

    Corresponding Author: Shawneequa Callier, MA JD – The George Washington University School of Medicine and Health Sciences

    Panelist: Lori B. Chibnik – Harvard TH Chan School of Public Health

    Panelist: Elise Li Zheng, PhD – Columbia University

    Panelist: Paul Meller, PhD – Wellcome Trust

  • 1:30 PM – 3:00 PM ET
    B3 - Paper Session B3
    Equity and justice in genetics
  • 1:30 PM – 3:00 PM ET
    B4 - Paper Session B4
    Community engagement
  • 3:00 PM – 3:30 PM ET
    Break
  • 3:30 PM – 5:00 PM ET
    C1 - Ableism, Intersectionality and Justice in Genomic Science

    Corresponding Author: Maya Sabatello, LLB, PhD – Columbia University

    Panelist: Chris Donohue – National Human Genome Research Institute

    Panelist: Tracy King, MD, MPH – Eunice Kennedy Shriver National Institute of Child Health and Human Development

    Panelist: Alejandra N. Aguirre

  • 3:30 PM – 5:00 PM ET
    C2 - Indigenous principlism in ELSI: Relational solidarity, data sovereignty and social justice

    Corresponding Author: Vanessa Hiratsuka, PhD MPH – Southcentral Foundation

    Panelist: Julie Beans – Southcentral Foundation

    Panelist: Christie Byars – Chickasaw Nation

    Panelist: Joseph Yracheta – Native BioData Consortium

    Panelist: Jessica Blanchard, MA, PhD – University of Oklahoma

  • 3:30 PM – 5:00 PM ET
    C3 - Paper Session C3
    Biobanking and genomic databases
  • 3:30 PM – 5:00 PM ET
    C4 - Paper Session C4
    Reproductive genetics
  • 5:00 PM – 7:00 PM ET
    01- Stakeholder concerns about ethical, legal, and social implications of the genetics of post-traumatic stress disorder (PTSD)

    Presenter: Brandy M. Fox, MSHCE, PhD – Stanford Center for Biomedical Ethics

  • 5:00 PM – 7:00 PM ET
    02- Sponsored Genetic Testing and Patient Decision Making

    Presenter: Emma Nelson, MS, MA – Case Western Reserve University

  • 5:00 PM – 7:00 PM ET
    03- Informed consent at scale: choice, privacy, and data-sharing strategies for a large, unselected research cohort

    Presenter: Sarah Elson, PhD – 23andMe, Inc.

  • 5:00 PM – 7:00 PM ET
    04- Democratization and Cloud-Based Genomic Data Sharing: Views of Platform Developers and Early Adopters

    Presenter: Sarah C. Nelson, MPH, PhD – University of Washington

  • 5:00 PM – 7:00 PM ET
    05- The promise of comprehensive retention and research use of residual newborn screening bloodspots

    Presenter: Erin Johnson, PhD – University of Utah

  • 5:00 PM – 7:00 PM ET
    06- Responsible sharing to minimize harmful secondary use of large datasets

    Presenter: Pilar Ossorio, PhD, JD – University of Wisconsin; Morgridge Institute for Research

  • 5:00 PM – 7:00 PM ET
    07- Neurogenetics and Indigenous Data Sovereignty: Emerging Ethical Considerations

    Presenter: Jonathan Kim, BS, MPH – Arizona State University

  • 5:00 PM – 7:00 PM ET
    08- Addressing ethical implications of biomedical research through art and design

    Presenter: Jusaku Minari, PhD – Center for iPS Cell Research and Application (CiRA), Kyoto University

  • 5:00 PM – 7:00 PM ET
    09- Deliberations about Genetics Research and Policy Concerns on the Navajo Nation

    Presenter: Luke Nez – University of California, Los Angeles

  • 5:00 PM – 7:00 PM ET
    10- Informational needs and attitudes toward pharmacogenomic testing among parents of ethnically diverse pediatric acute lymphoblastic leukemia patients

    Presenter: Abigail Celeste Martinez – Baylor College of Medicine

  • 5:00 PM – 7:00 PM ET
    11- A qualitative study on the meaning of gene drive concept in a malaria trial context in Mali

    Presenter: Samba Diarra – Université des Sciences des Techniques et des Technologies de Bamako-Mali (USTTB)

  • 5:00 PM – 7:00 PM ET
    12- What is a Cure: Perspectives on the Meaning of Cure from within the Sickle Cell Disease Community

    Presenter: Marilyn S. Baffoe-Bonnie, PhD – National Institutes of Health

  • 5:00 PM – 7:00 PM ET
    13- Analyzing the Influence of Social Networks on Community-based Research Creating Gene Therapy Education Materials

    Presenter: Diba Seddighi – National Human Genome Research Institute, National Institute of Health

    Presenter: Tiffany Jackson

  • 5:00 PM – 7:00 PM ET
    14- Eugenic States: A Contextual Archive

    Co-Author: Gianna May Sanchez, PhD Candidate – University of Michigan

    Presenter: Carly Bobak – Dartmouth College

    Presenter: Jane Huang

    Presenter: Alexandra Stern – UCLA

    Presenter: Jacqueline Wernimont – Dartmouth College

  • 5:00 PM – 7:00 PM ET
    15- Patient associations for genetic conditions and prenatal cell-free DNA screening: how their knowledge can contribute to pregnant people’s preparedness

    Presenter: Marie-Françoise Malo, MA – University of Montreal (Canada)

  • 5:00 PM – 7:00 PM ET
    16- Promoting Diverse Recruitment in Genomic Research: The Impact of Community Partnerships in the BabySeq Project

    Presenter: Sheyenne Walmsley, MS, CGC – Mass General Brigham

  • 5:00 PM – 7:00 PM ET
    17- Understanding ableism in grant application abstracts for genetic and genomic autism research

    Presenter: Chris Gunter, PhD – National Human Genome Research Institute, National Institute of Health

  • 5:00 PM – 7:00 PM ET
    18- Promoting Justice for Sickle Cell Disease in the Genomic Era: A Roadmap of Stakeholders & Ethical Responsibilities

    Presenter: Tessa Youngner, MS – Harvard Medical School Center for Bioethics

  • 5:00 PM – 7:00 PM ET
    19- Examining the benefits of Participant Engagement in Cancer Genome Sequencing (PE-CGS): Progress to date of the PE-CGS Network

    Presenter: Anne Schuster, PhD – The Ohio State University

  • 5:00 PM – 7:00 PM ET
    20- Prioritization of research engaged with rare disease stakeholders: a systematic review and thematic analysis

    Presenter: Hannah Kim – Yonsei University

  • 5:00 PM – 7:00 PM ET
    21- Qualitative Exploration of Diverse Participant Recruitment in NBSeq Research: Lessons from the BabySeq Project

    Presenter: Stacey Pereira, PhD – Baylor College of Medicine Center for Medical Ethics and Health Policy

  • 5:00 PM – 7:00 PM ET
    22- Ethical challenges of community-based organizations engaged in community-led research: a case study to inform future genomics and big health data research

    Presenter: Joon-Ho Yu, MPH, PhD – University of Washington School of Medicine

  • 5:00 PM – 7:00 PM ET
    23- Sociogenomic Friction in the Landscape of Neurodiversity

    Presenter: Matthew Kucmanic, MA, MPH – University of Iowa

  • 5:00 PM – 7:00 PM ET
    24- Genomic Science in the Era of Space Exploration

    Presenter: Roel Feys, PhD – University of Miami

  • 5:00 PM – 7:00 PM ET
    25- Dynamic Clustering of Genomics Cohorts beyond Race, Ethnicity—and Ancestry

    Presenter: Hussein Mohsen, MS, MA, PhD – Memorial Sloan Kettering Cancer Center

  • 5:00 PM – 7:00 PM ET
    26- “If there is no remedy, then what is the use of frustration?” Precision Medicine and Patient and Caregiver Perceptions of Alzheimer’s Disease

    Presenter: Jill O. Robinson, MA – Baylor College of Medicine

  • 5:00 PM – 7:00 PM ET
    27- Lynch syndrome and decision-making for risk-reducing oophorectomy: considerations beyond cancer

    Presenter: Jazmine Gabriel, PhD, MS, CGC – Geisinger College of Health Sciences

  • 5:00 PM – 7:00 PM ET
    28- Understanding Preferences for Genetic Testing in Minoritized Populations: A Review of Heterogeneity Analyses in Stated Preference Research

    Presenter: Taylor Montgomery, MPH – Harvard Pilgrim Health Care Institute

  • 5:00 PM – 7:00 PM ET
    29- Ancestry-based limitations in polygenic risk estimation: PCP perspectives

    Presenter: Betty Cohn, MBE – Institute for Public Health Genetics at the University of Washington

  • 5:00 PM – 7:00 PM ET
    30- Poster 1. Personal and clinical utility of genetic testing: strategies for assessment and measurement

    Presenter: Robin Z. Hayeems, ScM, PhD – The Hospital for Sick Children; University of Toronto

  • 5:00 PM – 7:00 PM ET
    31- Poster 2. Personal and clinical utility of genetic testing: strategies for assessment and measurement

    Presenter: Robin Z. Hayeems, ScM, PhD – The Hospital for Sick Children; University of Toronto

  • 5:00 PM – 7:00 PM ET
    32- Personal and clinical utility of genetic testing: strategies for assessment and measurement

    Presenter: Robin Z. Hayeems, ScM, PhD – The Hospital for Sick Children; University of Toronto

  • 5:00 PM – 7:00 PM ET
    33- Personal and clinical utility of genetic testing: strategies for assessment and measurement

    Presenter: Robin Z. Hayeems, ScM, PhD – The Hospital for Sick Children; University of Toronto

  • 5:00 PM – 7:00 PM ET
    34- Cross-Sectional Analysis of U.S. Health Insurance Payer Policies for Pharmacogenomic and Pharmacodynamic Testing for Psychiatric Therapies

    Presenter: Sandra E. Yankah, PhD – Duke Margolis Institute for Health Policy

    Presenter: Maryam Nafie – Duke University

  • 5:00 PM – 7:00 PM ET
    35- “The biggest struggle:” Discordance in genetic variant interpretation obstructs the wide-scale use of genomic sequencing in medicine

    Presenter: Kellie Owens, PhD – Division of Medical Ethics, NYU Grossman School of Medicine

  • 5:00 PM – 7:00 PM ET
    36- Barriers in the genetic testing pipeline: Rationale for Re-offering Testing after Refusal

    Presenter: Faith Beers, MS – University of Washington

  • 5:00 PM – 7:00 PM ET
    37- Exploring the Immediate Impact of APOE ε4ε4 Genotype Disclosure among Latinos

    Presenter: Daniela Diaz Caro, MS, CGC – Gertrude H. Sergievsky Center, Columbia University Irving Medical Center

  • 5:00 PM – 7:00 PM ET
    38- Patient Perspectives on Direct-to-Consumer Genetic Testing for Hereditary Cancer Risk

    Presenter: Madison Kilbride, PhD – University of Utah

  • 5:00 PM – 7:00 PM ET
    39- Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE): Assessing Value of Genetic Testing from Patients’ Perspectives in Multiple Clinical Contexts

    Presenter: Elise Poole, MHSc – The Hospital for Sick Children

  • 5:00 PM – 7:00 PM ET
    40- Eugenics Within the Context of Polygenic Embryo Screening

    Presenter: Abigail Celeste Martinez – Baylor College of Medicine

  • 5:00 PM – 7:00 PM ET
    Reception and Poster Presentations
  • Tuesday, June 11, 2024
  • 7:30 AM – 8:30 AM ET
    Breakfast
  • 7:30 AM – 8:30 AM ET
    Registration
  • 8:30 AM – 8:50 AM ET
    Welcome and Plenary 2
  • 8:50 AM – 10:00 AM ET
    Welcome and Plenary 2
  • 10:00 AM – 10:30 AM ET
    Break
  • 10:30 AM – 12:00 PM ET
    D1 - Addressing inequity in genomics: Normative and pragmatic considerations in using distributional cost-effectiveness analysis to guide decision making
  • 10:30 AM – 12:00 PM ET
    D2 - Artificial intelligence for precision medicine: How close to ‘personalized’ can we really get?
  • 10:30 AM – 12:00 PM ET
    D3 - Digital solutions to deliver genomic medicine: Taking a closer look at what’s under the hood
  • 10:30 AM – 12:00 PM ET
    D4 - Paper Session D4
    Clinical genetic testing
  • 12:00 PM – 1:30 PM ET
    Lunch
  • 12:00 PM – 1:30 PM ET
    Trainee Lunch
  • 1:30 PM – 3:00 PM ET
    E1 - Reimagining the Benefits of Pediatric Genomics: Beyond Clinical Utility versus Personal Utility
  • 1:30 PM – 3:00 PM ET
    E2 - Implementation of genome-informed risk assessments for diverse and underrepresented populations: Lessons learned from the eMERGE IV study
  • 1:30 PM – 3:00 PM ET
    E3 - Paper Session E3
    Community engagement
  • 1:30 PM – 3:00 PM ET
    E4 - Paper Session E4
    Education and public understanding of genetic science
  • 3:00 PM – 3:30 PM ET
    Break
  • 3:30 PM – 5:00 PM ET
    F1 - Improving care for marginalized populations at risk for hereditary cancer syndromes: Innovations that expanded genomic services’ reach in the CHARM study.
  • 3:30 PM – 5:00 PM ET
    F2 - Global Perspectives on Implementing Clinical Genomic Sequencing Equitably, Effectively and Efficiently
  • 3:30 PM – 5:00 PM ET
    F3 - Paper Session F3
    Genetic counseling
  • 3:30 PM – 5:00 PM ET
    F4 - Paper Session F4
    Education
  • 5:00 PM – 7:00 PM ET
    01- Who receives their genetic testing results? Exploring patient portal use and the implications of technological innovation
  • 5:00 PM – 7:00 PM ET
    02- Analysis of the Impact of NHGRI’s Centers for Excellence in ELSI Research (CEER) Program
  • 5:00 PM – 7:00 PM ET
    03- Poster 1. #DATABACK: Structuring Indigenous Bioeconomies through Indigenous Data and Digital Sovereignty for Precision Health
  • 5:00 PM – 7:00 PM ET
    04- Poster 2. #DATABACK: Structuring Indigenous Bioeconomies through Indigenous Data and Digital Sovereignty for Precision Health
  • 5:00 PM – 7:00 PM ET
    05- Poster 3. #DATABACK: Structuring Indigenous Bioeconomies through Indigenous Data and Digital Sovereignty for Precision Health
  • 5:00 PM – 7:00 PM ET
    06- Connecting with NHGRI’s Ethical, Legal and Social Implications (ELSI) Research Program
  • 5:00 PM – 7:00 PM ET
    07- Regulation of data sharing in international genomics research: Ethical, social and legal implications
  • 5:00 PM – 7:00 PM ET
    08- Considerations on Sex Data Bias
  • 5:00 PM – 7:00 PM ET
    09- Demographic Associations with Genetic Familiarity and Self-Efficacy: Implications for Genetic Testing for Hereditary Cancers
  • 5:00 PM – 7:00 PM ET
    10- Engaging Multiracial Community in Genomics Research: What Does it Mean?
  • 5:00 PM – 7:00 PM ET
    11- Exploring Patient Perceptions of Emerging Gene Therapies for Arrhythmogenic Right Ventricular Cardiomyopathy
  • 5:00 PM – 7:00 PM ET
    12- A Contextual Integrity Framework for Genomic Data
  • 5:00 PM – 7:00 PM ET
    13- How Judges Decide: The Impact of Bio-Behavioral Sciences on Legal Decision-Making
  • 5:00 PM – 7:00 PM ET
    14- Ethical Considerations in Measuring Genetic and Genomic Competence Among Nurses: Insights from Survey Instruments
  • 5:00 PM – 7:00 PM ET
    15- Bridging the gap: a trainee-led effort to integrate ethics into graduate-level genetics education
  • 5:00 PM – 7:00 PM ET
    16- Genome-Wide Studies in Polycystic Ovary Syndrome and multiancestry analyses: a systematic review with equity in mind
  • 5:00 PM – 7:00 PM ET
    17- Project GIVE: Expanding Genetic Testing to Underserved Areas in the Rio Grande Valley Using an EHR-Agnostic Tele-Engagement Platform
  • 5:00 PM – 7:00 PM ET
    18- Re-Envisioning Translational Justice: Identifying Value-Based Policy Frameworks Supporting Prenatal Gene Editing
  • 5:00 PM – 7:00 PM ET
    19- Reproductive decision-making in people with transfusion-dependent-thalassemia
  • 5:00 PM – 7:00 PM ET
    20- Información de la Enfermedad de Alzheimer para Latinos (IDEAL): A Study Framework for Alzheimer's Genetic Risk Disclosure in an Urban, Latino Population
  • 5:00 PM – 7:00 PM ET
    21- Implementing a DNA strategy to address forcibly separated Ukrainian children
  • 5:00 PM – 7:00 PM ET
    22- Poster 1. The Ethics of Sequencing Every Baby at Birth: International Perspectives
  • 5:00 PM – 7:00 PM ET
    23- Poster 2. The Ethics of Sequencing Every Baby at Birth: International Perspectives
  • 5:00 PM – 7:00 PM ET
    24- Anticipating ELSI of the NIH Human Virome Program

    Presenter: Gail E. Henderson, PhD – University of North Carolina - Chapel Hill

  • 5:00 PM – 7:00 PM ET
    25- Advancing Return of Individual Research Results for Biomarkers – A PRISMA-Scoping Review
  • 5:00 PM – 7:00 PM ET
    26- Considerations of Therapeutic Gene Editing on the Indigenous Population in Northern Ontario
  • 5:00 PM – 7:00 PM ET
    27- What counts as sex/gender and who decides? Policy analysis of US legal gender marker changes on identification documents
  • 5:00 PM – 7:00 PM ET
    28- A Tool for Ethical Analysis of Persuasion and Influence in Genetic Counseling Communication
  • 5:00 PM – 7:00 PM ET
    29- Lynch Syndrome and risk-reducing gynecologic surgery: Decision-making factors and life context
  • 5:00 PM – 7:00 PM ET
    30- What motivates adopted individuals to pursue elective genetic testing? Findings from the Sanford Chip program
  • 5:00 PM – 7:00 PM ET
    31- How does the severity of a genetic condition affect the utility of knowing about it?
  • 5:00 PM – 7:00 PM ET
    32- Experiences of Black Pregnant People Offered Prenatal Diagnosis in the Setting of Fetal Anomalies: A Qualitative Study
  • 5:00 PM – 7:00 PM ET
    33- The Nurtured Genetics Hypothesis and its Psychosocial Implications
  • 5:00 PM – 7:00 PM ET
    34- Decision Stability among Adolescents and Young Adults Making Choices about Learning Genomic Research Results
  • 5:00 PM – 7:00 PM ET
    Reception and Poster Presentations
  • Wednesday, June 12, 2024
  • 7:30 AM – 8:30 AM ET
    Breakfast
  • 7:30 AM – 8:30 AM ET
    Registration
  • 8:30 AM – 8:50 AM ET
    Welcome and Announcements
  • 8:50 AM – 10:00 AM ET
    Welcome and Plenary 3
  • 10:00 AM – 10:30 AM ET
    Break
  • 10:30 AM – 12:00 PM ET
    G1 - Editing Future Generations, Centering Translational Justice: How Do Potential End Users Imagine the Benefits and Tradeoffs of Prenatal Genetic Therapies?
  • 10:30 AM – 12:00 PM ET
    G2 - Cross-Disciplinary Research and Public Engagement on Eugenic Sterilization: Mixed Methods, Data Visualization, and Cross-State Comparisons
  • 10:30 AM – 12:00 PM ET
    G3 - Experiential ethics training for genomic researchers
  • 10:30 AM – 12:00 PM ET
    G4 - Paper Session G4
    Clinical genetic testing
  • 12:00 PM – 1:30 PM ET
    Lunch
  • 1:30 PM – 3:00 PM ET
    H1 - Novel Nonmedical Uses of Genetic Information and Future Concerns
  • 1:30 PM – 3:00 PM ET
    H2 - Contemporary bioethics and policy challenges for children with profound disabilities: Cardiac Surgery in Children with Trisomy 18.
  • 1:30 PM – 3:00 PM ET
    H3 - Weighing the Benefits, Harms, and Limitations of Genetic Testing in the Workplace
  • 1:30 PM – 3:00 PM ET
    H4 - Paper Session H4
    Equity and justice in genetics
  • 3:00 PM – 3:30 PM ET
    Break
  • 3:30 PM – 5:00 PM ET
    J1 - From Person-Centered to Family-Centered: Navigating Practical and Ethical Issues in Health System-Led Contact for Cascade Screening
  • 3:30 PM – 5:00 PM ET
    J2 - The ELSI of Engagement: Benefits and Challenges to Achieving a Just Genomics
  • 3:30 PM – 5:00 PM ET
    J3 - Paper Session J3
    Equity and justice in genetics
  • 3:30 PM – 5:00 PM ET
    J4 - Paper Session J4
  • 5:00 PM – 6:00 PM ET
    Closing Plenary Panels

    Plenary Panelist: Maui Hudson – University of Waikato, Te Pua Wananga ki te Ao

    Plenary Panelist: Vardit Ravitsky – The Hastings Center

    Plenary Panelist: Timothy Yu – Harvard Medical School

    Plenary Moderator: Sandra Soo-Jin Lee, PhD – Columbia University

    Plenary Moderator: Mildred Cho – Stanford University