Series
The 5th ELSI Congress - ELSIcon2022
Title
ELSIcon2022 Paper: Examining Embeddedness: A Call for Principles and Best Practices for Integrating ELSI
Type
Conference
ELSIcon2022 • Paper • May 27, 2022
Jenny Reardon, Stephanie M. Fullerton, and Sandra Soo-Jin Lee
Increasingly, public and private funders have come to recognize the critical significance of incorporating ethical and societal analysis into the design of science, technology, engineering and math (STEM) research. The NIH Ethical, Legal and Social Implications (ELSI) program has for over three decades supported the integration of bioethicists, social scientists, legal scholars and policy makers onto genomic research teams. Despite this public investment, there is little guidance on best practices for fostering this integration or for evaluating its impact. Researchers with expertise in ELSI are frequently asked to participate in research projects in name only or near the end of the writing of research proposals, leading to research in which ethical considerations are potentially marginalized or left under-explored. Even when such research is carefully designed in advance, it is often not well-understood by STEM researchers, or may be viewed as slowing down scientific progress, rather than as an integral and central to achieving scientific objectives. This can lead to researchers feeling they are working at cross-purposes. This presentation will describe the work of the multi-disciplinary, multi-institutional Leadership in Ethical and Equitable Design (LEED) of Science and Engineering Working Group, which aims to clarify, review, and revitalize the roles and value of engaging bioethicists and scholars in the social sciences, humanities and the arts in STEM research. We will discuss barriers and challenges to equitable, productive integration of ELSI expertise and the need for guidelines to establish the grounds and support for revitalizing and extending future collaborations in a productive manner.
Tags
Keywords
Reflections on the ELSI field
equity and justice in genetics
Paper
Pre-Recorded
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Extending the Belmont Principles: Sovereignty and Solidarity in Genomic Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13
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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 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
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria
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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
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Ensuring equity through insurance coverage for whole exome sequencing and reanalysis
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
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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: Why do Primary Care Patients Pursue Genetic Testing as an Elective Clinical Service? Findings from the Sanford Chip Program
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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
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
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Exploring Disparities and Equity Across the Newborn Screening System
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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
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
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Late-Breaking: South Africans’ opinions on human heritable genome editing: Promoting equal access as key to the future
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7
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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: 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 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
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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 Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Patients’ and Parents’ Perceived Utility of Genomic Sequencing: Instrument Development and Validation
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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 Paper: Cancer's Margins: Exploring Trans* Experiences of Hereditary Cancer Risk
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees
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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 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 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 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
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Genetic Attribution and Felt Stigma in People with Epilepsy
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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 Paper: Investigating an Ethos of Duty in Precision Medicine Research Calls for Minority Participation
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 Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots
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