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Full Schedule

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Full Schedule

  • Monday, June 10, 2024
  • 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