Full Schedule

7:30 AM – 8:30 AM ET

Breakfast

Location: The Gallery

7:30 AM – 8:30 AM ET

Registration

Location: Welcome Desk

8:30 AM – 8:50 AM ET

Welcome and Announcements

Location: Forum A

Co-Chair: – Stanford University

8:50 AM – 10:00 AM ET

Plenary: What Can AI-ethics Learn from Gen-ethics: ELSI Lessons for the Coming Wave

Location: Forum A

Plenary Speaker: – The Hastings Center

10:00 AM – 10:30 AM ET

Break

10:30 AM – 12:00 PM ET

Addressing inequity in genomics: Normative and pragmatic considerations in using distributional cost-effectiveness analysis to guide decision making

Location: Forum A

Corresponding Author: – Harvard University

Panelist: – University of California, San Francisco

Panelist: – University of Toronto (Canada)

Panelist: – The George Washington University

Equity and justice in geneticsMethodology and study design

10:30 AM – 12:00 PM ET

Artificial intelligence for precision medicine: How close to ‘personalized’ can we really get?

Location: Forum B

Corresponding Author: – Stanford University

Panelist: – Baylor College of Medicine

Panelist: – Stanford University

AI and machine learning

10:30 AM – 12:00 PM ET

Digital solutions to deliver genomic medicine: Taking a closer look at what’s under the hood

Location: Hub 2

Corresponding Author: – Boston University

Panelist: – University of South Florida

Panelist: – University of Pennsylvania

Panelist: – Rutgers University

Panelist: – University of Utah

Genetic counselingMethodology and study designReturn of results and incidental findings

10:30 AM – 12:00 PM ET

Paper Session D4

Location: Hub 1

Clinical genetic testing

10:30 AM – 12:00 PM ET

PRAGMatIQ study - Rapid whole-genome sequencing in children in acute care in a universal health care system: Physicians underestimate parental expectations and concerns

Location: Hub 1

Speaker: – Université de Montréal and CHU Ste-Justine (Canada)

Clinical genetic testingReturn of results and incidental findings

10:30 AM – 12:00 PM ET

Prenatal genetic information as preparation: Parents and clinicians reimagining benefits for families and future children

Location: Hub 1

Speaker: – Case Western Reserve University

Clinical genetic testingPerinatal and public health genetic screeningReproductive genetics

10:30 AM – 12:00 PM ET

Clinician Perspectives on Polygenic Risk Scores in Child and Adolescent Psychiatry: Current Concerns and Future Utility

Location: Hub 1

Speaker: – Baylor College of Medicine

Clinical genetic testingReturn of results and incidental findings

10:30 AM – 12:00 PM ET

Patient Perspectives on the use of Polygenic Risk Scores in Psychiatry

Location: Hub 1

Speaker: – Harvard University

Return of results and incidental findings

12:00 PM – 1:30 PM ET

Lunch

Location: The Gallery

12:00 PM – 1:30 PM ET

Trainee Lunch

Location: The Living Room

1:30 PM – 3:00 PM ET

Newborn Screening and Early Intervention

Location: Forum A

Corresponding Author: – Norton Children's Research Institute

Panelist: – University of California, San Francisco

Panelist: – Norton Children's Research Institute

Panelist: – Health Resources and Services Administration

Panelist: – RTI International

Clinical genetic testingLaw, regulation, and governance

1:30 PM – 3:00 PM ET

Implementation of genome-informed risk assessments for diverse and underrepresented populations: Lessons learned from the eMERGE IV study

Location: Forum B

Corresponding Author: – Mount Sinai Hospital

Panelist: – University of Washington

Panelist: – Northwestern University

Panelist: – Vanderbilt University

Panelist: – Children’s Hospital of Philadelphia

Equity and justice in genetics

1:30 PM – 3:00 PM ET

Paper Session E3

Location: Hub 2

Community engagement

1:30 PM – 3:00 PM ET

Lessons on Working with Community Advisory Boards to Address Controversial Genomics Research

Location: Hub 2

Speaker: – Mayo Clinic

Community engagement

1:30 PM – 3:00 PM ET

Nothing About Us Without Us: Sharing Relevant Results with Communities that Provide Genomic Data

Location: Hub 2

Speaker: – Variant Bio

Community engagementEquity and justice in geneticsReturn of results and incidental findings

1:30 PM – 3:00 PM ET

Reimagining reproductive autonomy in light of expanded genomic testing

Location: Hub 2

Speaker: – The University of Sydney (Australia)

Community engagementGenetic counselingPerinatal and public health genetic screening

1:30 PM – 3:00 PM ET

Justice is not being served: A critique of public engagement about human genome editing

Location: Hub 2

Speaker: – Lakehead University (Canada)

Community engagementEquity and justice in genetics

1:30 PM – 3:00 PM ET

Paper Session E4

Location: Hub 1

Education and public understanding of genetic science

1:30 PM – 3:00 PM ET

Anticipating social and interpersonal influence of polygenic scores in future clinical settings

Location: Hub 1

Speaker: – National Human Genome Research Institute, National Institutes of Health

1:30 PM – 3:00 PM ET

Divergence Between Clinician and Patient Perspectives on Polygenic Embryo Screening

Location: Hub 1

Speaker: – Baylor College of Medicine

Reproductive genetics

1:30 PM – 3:00 PM ET

Polygenic Embryo Screening: High Approval Despite Substantial Concerns from the U.S. Public

Location: Hub 1

Speaker: – Harvard University

Education and public understanding of genetic scienceReproductive genetics

1:30 PM – 3:00 PM ET

Polygenic Prediction: How Scientists Navigate Uncertainty in an Emergent Field

Location: Hub 1

Speaker: – New York University

Education and public understanding of genetic scienceEquity and justice in genetics

3:00 PM – 3:30 PM ET

Break

3:30 PM – 5:00 PM ET

Improving care for marginalized populations at risk for hereditary cancer syndromes: Innovations that expanded genomic services’ reach in the CHARM study.

Location: Forum A

Corresponding Author: – Seattle Childrens Research Institute

Panelist: – Seattle Childrens Research Institute

Panelist: – University of Washington

Panelist: – University of California, San Francisco

Clinical genetic testingEquity and justice in genetics

3:30 PM – 5:00 PM ET

Global Perspectives on Implementing Clinical Genomic Sequencing Equitably, Effectively and Efficiently

Location: Forum B

Corresponding Author: – The University of Calgary (Canada)

Panelist: – University of California, San Francisco

Panelist: – Harvard University

Panelist: – The Hospital for Sick Children Research Institute (Canada)

Panelist: – Queen Mary University of London (United Kingdom)

Clinical genetic testing

3:30 PM – 5:00 PM ET

Paper Session F3

Location: Hub 2

Genetic counseling

3:30 PM – 5:00 PM ET

Genetic Diagnosis, Bodies, and Imagined Family: Assemblage Perspectives On Reproductive And Family Planning With an Incompletely Penetrant and Variably Expressive Condition

Location: Hub 2

Speaker: – Johns Hopkins University

Genetic counseling

3:30 PM – 5:00 PM ET

Conceptions of Health and Polygenic Embryo Screening

Location: Hub 2

Speaker: – Baylor College of Medicine

Reproductive genetics

3:30 PM – 5:00 PM ET

The Impact of Patient Race and Polygenic Risk Scores on Cancer Genetic Counselors’ Risk Assessment and Management in Breast Cancer Clinical Vignettes

Location: Hub 2

Speaker: – NIH/Johns Hopkins Genetic Counseling Graduate Program

Genetic counseling

3:30 PM – 5:00 PM ET

“Doing ethics” on the job: Genetic counselors navigating the ethics of work in different settings

Location: Hub 2

Speaker: – City University of New York

Genetic counseling

3:30 PM – 5:00 PM ET

Paper Session F4

Location: Hub 1

Education

3:30 PM – 5:00 PM ET

Impact of Returning Genomic Results Related to Adult-Onset Conditions to Pediatric Patients

Location: Hub 1

Speaker: – Geisinger College of Health Sciences

Clinical genetic testingReturn of results and incidental findings

3:30 PM – 5:00 PM ET

The Ethics of “Traceback Testing”: Perspectives of First-Degree Relatives of Deceased Individuals on Privacy, Consent and Benefit.

Location: Hub 1

Speaker: – Columbia University

Clinical genetic testing

3:30 PM – 5:00 PM ET

Tumor Whole-Genome-Sequencing: ethical guidance on dealing with germline data

Location: Hub 1

Speaker: – Antoni van Leeuwenhoek Hospital (Netherlands)

Clinical genetic testing

3:30 PM – 5:00 PM ET

Legal Protections Against Genetic Discrimination: Awareness Among Adults and Adolescents with Psychiatric Conditions and Caregivers

Location: Hub 1

Speaker: – Harvard University

Clinical genetic testingLaw, regulation, and governance

5:00 PM – 7:00 PM ET

01- Who receives their genetic testing results? Exploring patient portal use and the implications of technological innovation

Location: The Gallery

Presenter: – Case Western Reserve University

AI and machine learningEquity and justice in genetics

5:00 PM – 7:00 PM ET

02- Analysis of the Impact of NHGRI’s Centers for Excellence in ELSI Research (CEER) Program

Location: The Gallery

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

5:00 PM – 7:00 PM ET

03- Poster 1. #DATABACK: Structuring Indigenous Bioeconomies through Indigenous Data and Digital Sovereignty for Precision Health

Location: The Gallery

Presenter: – Arizona State University / Native BioData Consortium

AI and machine learningBiobanking and genomic databasesIndigenous communities collaboration

5:00 PM – 7:00 PM ET

Using Artificial Intelligence and Machine Learning Approaches to Operationalize Indigenous Genomic Data Sovereignty and Improve Health Equity

Location: The Gallery

Presenter: – Arizona State University / Native BioData Consortium

AI and machine learningBiobanking and genomic databasesIndigenous communities collaboration

5:00 PM – 7:00 PM ET

05- Poster 3. #DATABACK: Structuring Indigenous Bioeconomies through Indigenous Data and Digital Sovereignty for Precision Health

Location: The Gallery

Presenter: – Arizona State University / Native BioData Consortium

AI and machine learningBiobanking and genomic databasesIndigenous communities collaboration

5:00 PM – 7:00 PM ET

06- Connecting with NHGRI’s Ethical, Legal and Social Implications (ELSI) Research Program

Location: The Gallery

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

5:00 PM – 7:00 PM ET

07- Regulation of data sharing in international genomics research: Ethical, social and legal implications

Location: The Gallery

Presenter: – Makerere University (Uganda)

Biobanking and genomic databasesEquity and justice in geneticsLaw, regulation, and governance

5:00 PM – 7:00 PM ET

08- Considerations on Sex Data Bias

Location: The Gallery

Presenter: – University of Rochester

Biobanking and genomic databasesLaw, regulation, and governance

5:00 PM – 7:00 PM ET

09- Population Differences in Genetic Literacy and Interest in Genetic Testing for Hereditary Cancer Syndromes Among a US Based Sample

Location: The Gallery

Presenter: – University of Washington

Clinical genetic testingEducation and public understanding of genetic science

5:00 PM – 7:00 PM ET

10- Engaging Multiracial Community in Genomics Research: What Does it Mean?

Location: The Gallery

Presenter: – Northwestern University

Community engagementEquity and justice in genetics

5:00 PM – 7:00 PM ET

11- Exploring Patient Perceptions of Emerging Gene Therapies for Arrhythmogenic Right Ventricular Cardiomyopathy

Location: The Gallery

Presenter: – Uniformed Services University of the Health Sciences

Methodology and study design

5:00 PM – 7:00 PM ET

12- A Contextual Integrity Framework for Genomic Data

Location: The Gallery

Presenter: – VU University Amsterdam (Netherlands)

Equity and justice in geneticsIndigenous communities collaboration

5:00 PM – 7:00 PM ET

13- How Judges Decide: The Impact of Bio-Behavioral Sciences on Legal Decision-Making

Location: The Gallery

Presenter: – Rutgers University

Education and public understanding of genetic scienceLaw, regulation, and governance

5:00 PM – 7:00 PM ET

14- Ethical Considerations in Measuring Genetic and Genomic Competence among Nurses: Insights from Survey Instruments

Location: The Gallery

Presenter: – Tampere University (Finland)

Education and public understanding of genetic scienceMethodology and study design

5:00 PM – 7:00 PM ET

15- Bridging the gap: a trainee-led effort to integrate ethics into graduate-level genetics education

Location: The Gallery

Presenter: – Stanford University

Education and public understanding of genetic scienceEquity and justice in genetics

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

Location: The Gallery

Presenter: – Pennsylvania State University

Equity and justice in genetics

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

Location: The Gallery

Presenter: – Baylor College of Medicine

Equity and justice in geneticsGenetic counseling

5:00 PM – 7:00 PM ET

18- Re-Envisioning Translational Justice: Identifying Value-Based Policy Frameworks Supporting Prenatal Gene Editing

Location: The Gallery

Presenter: – University of Miami

Equity and justice in geneticsLaw, regulation, and governance

5:00 PM – 7:00 PM ET

19- Reproductive decision-making in people with transfusion-dependent-thalassemia

Location: The Gallery

Presenter: – Pennsylvania State University

Equity and justice in geneticsReproductive genetics

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

Location: The Gallery

Presenter: – Columbia University

Equity and justice in geneticsGenetic counselingMethodology and study design

5:00 PM – 7:00 PM ET

21- Implementing a DNA strategy to reunify Ukrainian children separated from their families

Location: The Gallery

Presenter: – Lurie Children's

Equity and justice in genetics

5:00 PM – 7:00 PM ET

22- Poster 1. The Ethics of Sequencing Every Baby at Birth: International Perspectives

Location: The Gallery

Presenter: – University of Technology Sydney (Australia)

Equity and justice in geneticsPerinatal and public health genetic screening

5:00 PM – 7:00 PM ET

23- Poster 2. The Ethics of Sequencing Every Baby at Birth: International Perspectives

Location: The Gallery

Presenter: – University of Technology Sydney (Australia)

Equity and justice in geneticsPerinatal and public health genetic screening

5:00 PM – 7:00 PM ET

24- Anticipating ELSI of the NIH Human Virome Program

Location: The Gallery

Presenter: – University of North Carolina - Chapel Hill

Biobanking and genomic databasesEducation and public understanding of genetic science

5:00 PM – 7:00 PM ET

25- Advancing Return of Individual Research Results for Biomarkers – A PRISMA-Scoping Review

Location: The Gallery

Presenter: – Georgia State University

Return of results and incidental findings

5:00 PM – 7:00 PM ET

26- Considerations of Therapeutic Gene Editing on the Indigenous Population in Northern Ontario

Location: The Gallery

Presenter: – Lakehead University (Canada)

Equity and justice in geneticsIndigenous communities collaboration

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

Location: The Gallery

Presenter: – University of Washington

Equity and justice in genetics

5:00 PM – 7:00 PM ET

28- A Tool for Ethical Analysis of Persuasion and Influence in Genetic Counseling Communication

Location: The Gallery

Presenter: – Stanford University

Genetic counseling

5:00 PM – 7:00 PM ET

29- Lynch Syndrome and risk-reducing gynecologic surgery: gene-specific surgical uptake and patient decision-making experiences

Location: The Gallery

Presenter: – Geisinger College of Health Sciences

Genetic counseling

5:00 PM – 7:00 PM ET

30- What motivates adopted individuals to pursue elective genetic testing? Findings from the Sanford Chip program

Location: The Gallery

Presenter: – Harvard University

5:00 PM – 7:00 PM ET

31- How does the severity of a genetic condition affect the utility of knowing about it?

Location: The Gallery

Presenter: – CHU Sainte-Justine, Université de Montréal (Canada)

Perinatal and public health genetic screeningReproductive genetics

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

Location: The Gallery

Presenter: – University of North Carolina at Chapel Hill

Perinatal and public health genetic screening

5:00 PM – 7:00 PM ET

33- The Nurtured Genetics Hypothesis and its Psychosocial Implications

Location: The Gallery

Presenter: – Harvard University

Return of results and incidental findings

5:00 PM – 7:00 PM ET

34- Decision Stability among Adolescents and Young Adults Making Choices about Learning Genomic Research Results

Location: The Gallery

Presenter: – Mayo Clinic

Return of results and incidental findings

5:00 PM – 7:00 PM ET

Reception and Poster Presentations

Location: The Gallery