The 5th ELSI Congress - ELSIcon2022

ELSIcon2022: Paper Session 9

Conference

2022-06-02

ELSIcon2022 • Paper Session 9 • June 2, 2022

Includes discussion material from Erin Burke, Ilaria Galasso, and Crystal Gonzalez.

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Paper

equity and justice in genetics

Education and public reception of genetic science

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The lack of a standard definition of clinical utility limits the assessment of the clinical impacts of whole exome/whole genome sequencing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: A Survey on Public Perception toward the Korean National Bio Big Data Project
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Extending the Belmont Principles: Sovereignty and Solidarity in Genomic Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Ethical, Legal, and Social Implications of Stroke Genomic and Biobanking Research in Sub-Saharan Africa: Community Member Perspectives and Factors for Consideration
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Genetic testing for addiction: A qualitative examination of interest, motivations, and concerns among patients with gambling disorder and alcohol use disorder.
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Ethical, Clinical, Legal, and Economic Issues Surrounding Genetic Variant Reinterpretation
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Neglected ELSI in Biobanking: Addressing Issues of Governance, Stewardship, and Equity
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Socioeconomic Status and Interest in Pursuing Genetic Testing for Hereditary Cancer in a US Based Population
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Democratizing Knowledge for Sickle Cell Disease Gene Therapy: A Deliberative Stakeholder Engagement Approach
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Embryoids: What are they, should we be concerned, should they be regulated, and if so, how?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Returning Polygenic Risk Scores to Participants in a Pragmatic Clinical Trial of Breast Cancer Screening: Ethical Dilemmas and Participant (mis)Understanding
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Dorothy, We’re Not in dbGaP Anymore: Emerging Cloud-Based Biomedical Data and Analysis Platforms and their Implications for Data Stewardship
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Is Non-invasive Prenatal Testing Really Invasive? Examining Black Women’s Perceptions of Non-Invasive Prenatal Testing for Sickle Cell Disease
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Public Engagement in Governance of Human Genome Editing in the Post-He Jiankui Era
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: "Extremely slow and capricious:" Genetic Researcher Experiences Using Shared Data Resources
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Consumers’ Perspectives Following Direct-to-Consumer Genetic Testing for Cancer Risk
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Incorporating Patient and Relative Preferences in the Design of Traceback Cascade Testing Initiatives
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Patients’ expectations of benefits from large-panel genomic tumor testing in rural community oncology practices
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Consumer Willingness to Share Personal Digital Information for Health-Related Uses
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Ensuring equity through insurance coverage for whole exome sequencing and reanalysis
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: If we build it will they come? Navigating ELSI considerations for broad and responsible use of All of Us data by non-traditional researchers
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: A genetic counseling tool to reduce genetic essentialism and stigma/discrimination related to a hypothetical genetic risk for psychosis by educating high risk individuals about genetic malleability
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Engaging Adolescents in Genomic Decision Making
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Facilitators and barriers to ethical machine learning in healthcare: A qualitative study on developer perspectives of potential harms
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Parent-reported barriers and facilitators to accessing care recommended from genomic sequencing in pediatric cancer patients
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: The Ethics of Influence and Choice Architecture in Genomics: Where Have We Been and Where Are We Going?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Disability Justice and Precision Medicine Across the Lifespan: Towards a Future of Equity and Access
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Equity and Justice in Dementia Care: Perspectives on Ethical, Health, and Policy Implications of Tests and Treatments for Alzheimer's Disease and Related Dementias
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Impact of a direct-to-consumer (DTC) report on Alpha-1 antitrypsin deficiency (AATD) risk on clinical diagnosis of disease and on self-reported behaviors
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Translating Genomic Science: How Genetic Counselors Navigate Ethical and Professional Dilemmas in the 21st Century
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Return of Secondary Genomic Findings: Experiences of Sickle Cell Disease Research Participants
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Engagement with Historically Marginalized Communities: Methods, Positionality and ELSI in Precision Medicine Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Concordance with Pharmacogenomic Clinical Decision Support Recommendations is High Following Preemptive Pharmacogenomic Testing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Sangre Por Salud Community Advisory Board: Enhancing Genomic Medicine Research within a Latino-serving Federally Qualified Health Center.
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Participation in Sickle Cell Disease Clinical Research: How the Lived Experience Shapes Altruism
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Disrupting the status quo: a new model for benefit sharing in genomics research, a case study from South Africa
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Why do Primary Care Patients Pursue Genetic Testing as an Elective Clinical Service? Findings from the Sanford Chip Program
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Supporting Shared Decision Making for Parents of Infants/Young Children with Disorders/Differences of Sex Development: Creation of a Genetic Testing Decision Aid
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: COVID, Prenatal Genetic Testing, and the Digital Divide: Beyond Technology
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Towards Justice- Race, ELSI, and Imagined Futures
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Provider Practices in Referring for Germline Genetic Testing for Men with Prostate Cancer at a Safety-Net Hospital
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Salt In My Soul: A Panel Discussion of the Documentary
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Is it just for a screening program to give people all the information they want?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: The Impact of Receipt of Genetic Test Results for Autism
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Meet the Experts - Trainee Session
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Cultivating just & equitable genomics research partnerships with community health centers
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Goldilocks Conundrum: Disclosing Discrimination Risks in Informed Consent
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Genetic data and the collective good: participants as leaders to reconcile individual and public interest
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Late-Breaking Abstracts, June 2, 2022
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Voluntary Genetic Testing in the Workplace: An ELSI Analysis
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Clinician experiences and perspectives on the use of polygenic risk scores in child and adolescent psychiatry
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Development of a Consortium on Best Practices Related to Genomics and Adoption
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: South Africans’ opinions on human heritable genome editing: Promoting equal access as key to the future
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Child and adolescent psychiatrists’ knowledge, attitudes, and experiences with polygenic risk scores
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Rare Disease, Equity and Justice: Intersecting Disparities Across the Translational Spectrum
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Navigating community engagement in clinical trial research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Plenary: Ableism, Audism, Ethics, and Genetics: A Just and Equitable Deaf Future?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Late-Breaking Abstracts, June 1, 2022
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Why Do Patients Drop Out of Population-Based Screening for Hereditary Cancer Risk?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Mapping Diversity and Equity in Precision Medicine Research: Towards an Ethics of Inclusion
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Ethical Topics Associated with Population Genomic Screening
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: When Covering and Discovering Are at Odds: How the Logic of Health Insurance Undercuts the Promise of Precision Medicine for People with Hereditary Cancer Risks
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: The Limits of Consent and Patterns of Coercion in U.S. Histories of Eugenic Sterilization
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: What Can Intersectionality Bring to ELSI?: Transforming Theory into Practice
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: How and why do researchers use “Ancestry”?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Interrogating the Value of Return: Stakeholders’ Perspectives on Return of Results in Biomedical Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Sharing Qualitative Research Data: Addressing the Ethical and Logistical Challenges
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Permeable Membranes: How the blurring of boundaries and merging of silos should reshape ELSI research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Exploring Disparities and Equity Across the Newborn Screening System
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Sharing Data: Speedbumps on the Translational Trail
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Victims of Eugenic Sterilization in Utah: Demographics and Survivor Estimate
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Sociodemographic diversity in clinical genomics research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Distributional Cost-Effectiveness Analysis to Incorporate Health Equity Concerns in the Assessment of the Value of Precision Medicine Technologies
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Precision medicine for whom? Upstream and downstream exclusion
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Individual Genome as a Commons: Getting Genome Conceptualization and Governance Right
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Ethical Aspects of Reproductive Genetic Carrier Screening: Sharing Insights
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Challenges in Providing Genetic Risk Information to At-Risk Relatives of Patients Who are Deceased: Experiences of the Genetic Risk Analysis in Ovarian Cancer (GRACE) Study
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Welcome and Keynote: The Fallacy of Biological Race: Systemic Racism in Genomics
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Developing an Evidence Base for Investigative Genetic Genealogy (IGG) Policy-Making
The 5th ELSI Congress - ELSIcon2022 - ELIScon2022 Panel: Polygenic Embryo Screening: Ethical Considerations and Stakeholder Perspectives
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Genome and the Biome: Cystic Fibrosis @ Six Feet Apart
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Beyond the Binary: A Panel Discussion About Gender, Genomics, and Justice
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Listening Session: ELSI and the All of Us Research Program
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Physician and patient perspectives on the role of the microbiome in the prevention and treatment of colorectal cancer: the ethics of uncertainty in emerging science
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Patients’ and Parents’ Perceived Utility of Genomic Sequencing: Instrument Development and Validation
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Privacy and utility of genetic testing among families with hereditary cancers living in three countries: The International Cascade Screening experience
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Attitudes toward and actual uptake of genetic testing among a nationally representative sample of middle-to-older aged U.S. adults
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Laypeople overestimate the predictive power of polygenic scores but do not view them as any more anxiety-producing than other scores for the same trait
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Cancer's Margins: Exploring Trans* Experiences of Hereditary Cancer Risk
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Genetic testing for hereditary cancer risk in India: A Case Study
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: How Did the Biodeterministic View of Criminality Influence Coercive Sterilization in the State of Iowa from 1934 to 1976?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: “Big bioethics” research: Is the ELSI community ready?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Late-Breaking Abstracts - May 31, 2022
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: An ELSI-informed strategy to use DNA data for humanitarian family reunifications
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Health professionals’ perspectives on the ethics of using COVID-19 host genomic information for clinical and public health decision-making during the pandemic
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: What Led to the Abolition of Iowa’s State Eugenics Program in 1977?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Is a gene running in your family? Perceptions of responsibility to inform relatives about genetic cancer predisposition and risk management: an in-depth qualitative Swiss-Korean comparative analysis
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Biologization of Morality: Criminal Justice as a Matter of Public Health
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Using cost-utility analysis to evaluate the health equity impacts of population genetic screening for BRCA1/BRCA2
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: Genetics Adviser: The development, usability and acceptability testing of a patient-centered digital health application to support clinical genomic testing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Exploitation in Genetics Research: Vulnerability, Unfairness, and Degradation
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: What I learned about sequencing from my critically ill daughter
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Participant understandings of biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: An Exploration of Family Connection and African Ethnic Identity Development Among African Americans Finding African Genetic Relatives While Using Consumer Genetic Genealogy Services
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Inequality and Health: Sickle Cell Disease and Food Insecurity during the COVID-19 Pandemic
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia: Cases of Ethical, Legal, and Social Complexities from a Pragmatic Trial
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Revisiting the ethics of secondary findings in diagnostic genome-wide sequencing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Family Secrets Revealed: Experiences and impacts of participating in direct-to-consumer genetic relative-finder services
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Population Frequencies of Hereditary Cancer Gene Variants in Diverse Population Groups
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Awareness and Utilization of Genetic Testing among Hispanic/Latino Adults Living in the US: The Hispanic Community Health Study/Study of Latinos
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: The Perspective on Healthcare Providers on the Return of Secondary Genetic Findings in Africa
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Informational Disparities in Electronic Health Records: Implications for Delivery of Hereditary Cancer Genetic Services
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Investigating an Ethos of Duty in Precision Medicine Research Calls for Minority Participation
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Self-Identified Spirituality and Interest in Genetic Testing for Hereditary Cancer Risk
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Genetic Attribution and Felt Stigma in People with Epilepsy
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Willingness towards re-use of donated biosamples for stroke genomic research among West African stroke patients and stroke-free individuals
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Privacy, Agency, and Relationships in the Genomic Era: Views from the Public
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Role of Patient Advocacy Groups Following Prenatal Diagnosis of a Genetic Condition
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Interest in genetic testing offered as part of routine healthcare among an ethnically diverse sample of young women
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Shining a light on overlooked questions in ELSI genomics
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Genetic Options and Constraints: How Genetic Ancestry Tests Change Ethnic Identities
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Conceptualization and Measurement of Genetic Literacy
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Latina women’s knowledge of, preferences for, and experiences with prenatal genetic testing: A scoping review
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: White racial framing and comfort with medical research: a critical analysis
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: How does Genetics and Racial Disparities influence Stillbirth Risk and Reoccurrence?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Reconstruction of Normality Following the Diagnosis of Ehlers Danlos Syndromes
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Cystic Fibrosis Communities: Shifting Sites of Prognostic Imagination
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The need to consider a priori motivations and deterrents: A systematic review of elements influencing the consent process for genetic tests from the perspective of patients.
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Out of the tower and onto the ground: engaging communities and scientists in emergent research priorities
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: How useful is genome sequencing to parents of pediatric cancer patients? Findings from the Texas KidsCanSeq Study
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reporting “Clinical Utility” in NICU Sequencing Studies: Systematic Review and Call for Rethinking
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Examining Embeddedness: A Call for Principles and Best Practices for Integrating ELSI
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Physician Perspectives on Polygenic Risk Scores
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: INSIGHT @ Work: An Interdisciplinary Study on the Ethical, Legal and Social, Implications (ELSI) of Voluntary Workplace Genomic Testing (wGT)
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Resisting an old vice, or how polygenic risk information can do the most good

Related Videos

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Plenary: Ableism, Audism, Ethics, and Genetics: A Just and Equitable Deaf Future?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Privacy and utility of genetic testing among families with hereditary cancers living in three countries: The International Cascade Screening experience
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Parent-reported barriers and facilitators to accessing care recommended from genomic sequencing in pediatric cancer patients
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Is Non-invasive Prenatal Testing Really Invasive? Examining Black Women’s Perceptions of Non-Invasive Prenatal Testing for Sickle Cell Disease
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Ethical, Clinical, Legal, and Economic Issues Surrounding Genetic Variant Reinterpretation
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Embryoids: What are they, should we be concerned, should they be regulated, and if so, how?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Dorothy, We’re Not in dbGaP Anymore: Emerging Cloud-Based Biomedical Data and Analysis Platforms and their Implications for Data Stewardship
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Consumers’ Perspectives Following Direct-to-Consumer Genetic Testing for Cancer Risk
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Consumer Willingness to Share Personal Digital Information for Health-Related Uses
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: A genetic counseling tool to reduce genetic essentialism and stigma/discrimination related to a hypothetical genetic risk for psychosis by educating high risk individuals about genetic malleability
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: The Ethics of Influence and Choice Architecture in Genomics: Where Have We Been and Where Are We Going?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Socioeconomic Status and Interest in Pursuing Genetic Testing for Hereditary Cancer in a US Based Population
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Returning Polygenic Risk Scores to Participants in a Pragmatic Clinical Trial of Breast Cancer Screening: Ethical Dilemmas and Participant (mis)Understanding
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Public Engagement in Governance of Human Genome Editing in the Post-He Jiankui Era
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Patients’ expectations of benefits from large-panel genomic tumor testing in rural community oncology practices
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Neglected ELSI in Biobanking: Addressing Issues of Governance, Stewardship, and Equity
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Genetic testing for addiction: A qualitative examination of interest, motivations, and concerns among patients with gambling disorder and alcohol use disorder.
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Ensuring equity through insurance coverage for whole exome sequencing and reanalysis
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Engaging Adolescents in Genomic Decision Making