ELSIcon2022 Panel: Extending the Belmont Principles: Sovereignty and Solidarity in Genomic Research

The 5th ELSI Congress - ELSIcon2022

Conference

2022-10-31

ELSIcon2022 • Panel Session 2 • May 31, 2022

Vanessa Hiratsuka, Bobby Saunkeah, Joon-Ho Yu, Alize Ece Gunay, Krystal Tsosie

The Belmont principles of respect for persons, beneficence, and justice prioritize a Western-centered ethos of individual autonomy, but these principles do not properly address communitarian ethics. Yet, sovereignty and solidarity often confer a standing and collective obligation to ensure equity of community participation in precision health and genomic research. Furthermore, including principles of sovereignty and solidarity offers the Belmont Report a processual guide to increasing inclusion and equity, in practice. A panel representing four ELSI research groups will discuss sovereignty and solidarity as necessary elements to extend research protections under the Belmont principles and derived Common Rule regulations to protect tribal and non-tribal communities engaged in research from group harms. The panel will discuss inclusive standards for research governance that would likely benefit from more widespread application of group consent, as well as other community-based research approaches and governance strategies. The panel will raise the question of whether solidarity, even when sovereignty is not present, is sufficient to grant such communities authority over governing research that pertains to them.

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

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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”?

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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

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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

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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

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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

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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?

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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?

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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: Flash Session 1

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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 Panel: Developing an Evidence Base for Investigative Genetic Genealogy (IGG) Policy-Making

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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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Shining a light on overlooked questions in ELSI genomics

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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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa

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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

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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

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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

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

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