ELSIcon2022 Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities

The 5th ELSI Congress - ELSIcon2022

Conference

2022-05-31

ELSIcon2022 • Flash • May 31, 2022

Julie Beans

Introduction: Precision medicine research investigates the differences in individuals’ genetics, environment, and lifestyle to tailor health prevention and treatment options as part of an emerging model of health care delivery. To equitably advance precision medicine research, effective communication across a wide range of scientific and health care disciplines is needed. With the goal of including diverse communities in precision medicine research, a common understanding of what precision medicine research entails among the research team is necessary to properly inform and drive clear communication from the research team to community leaders and members in which the research takes place.

Methods: A multidisciplinary group convened over the course of a year and developed precision medicine research case examples to facilitate precision medicine research discussions with community leaders and members.

Results: We developed a shared definition of precision medicine research that grounded the group in a common understanding of what was involved with precision medicine research. In addition, six case examples of precision medicine research on genetic risk, pharmacogenetics, epigenetics, the microbiome, mobile health, and electronic health records were developed.

Discussion/Conclusion: The precision medicine research definition and case examples can be used as planning tools to establish a shared understanding of the scope of precision medicine research across multidisciplinary teams. Moreover, the precision medicine research definition and case examples can facilitate discussions with the diverse communities in which precision medicine research will take place. This shared understanding is vital for successful and equitable progress as precision medicine advances.

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Extending the Belmont Principles: Sovereignty and Solidarity in Genomic Research

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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.

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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?

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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

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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

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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 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 Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Goldilocks Conundrum: Disclosing Discrimination Risks in Informed Consent

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

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

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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 Panel: Engagement with Historically Marginalized Communities: Methods, Positionality and ELSI in Precision Medicine Research

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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

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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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: COVID, Prenatal Genetic Testing, and the Digital Divide: Beyond Technology

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 Panel: The Limits of Consent and Patterns of Coercion in U.S. Histories of Eugenic Sterilization

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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: 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 Plenary: Ableism, Audism, Ethics, and Genetics: A Just and Equitable Deaf Future?

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 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: 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: 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: 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 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 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 Paper: Cancer's Margins: Exploring Trans* Experiences of Hereditary Cancer Risk

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: 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: An ELSI-informed strategy to use DNA data for humanitarian family reunifications

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Genetic testing for hereditary cancer risk in India: A Case Study

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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

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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

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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

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

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