ELSIcon2022 Networking Session: Ethical Topics Associated with Population Genomic Screening

The 5th ELSI Congress - ELSIcon2022

Conference

2022-06-01

ELSIcon2022 • Networking Session • June 1, 2022

Kimberly Foss, Kate Saylor

This session was led by a genetic counselor and an ELSI researcher. Scientific advances have made genetic screening in unselected populations possible (and enticing), and early attempts at clinical programs have emerged across the country. These pilots aim to provide a clinical service, as well as to generate knowledge about implementation and prevalence/penetrance/expressivity in unselected groups. These programs raise numerous ethical questions ripe for discussion, including: What is the proper role of education or informed consent, and how can misconceptions of utility be avoided? How should equity in access to clinical programs and for research goals be promoted and evaluated? What are the obligations of program leaders to coordinate across programs to maximize generalizable knowledge? Is it ethical to provide non-actionable results? What is the obligation of a screening program to ensure access to medical management after concerning results? What ethical concerns are raised when pilot programs end? Considering ethical questions is essential to the design of early clinical programs and to assessing their outcomes. We aim to generate meaningful discussion regarding the implementation of genetic screening with consideration of the blurred line between research and clinical care.

Videos in Series

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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

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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: Fresh Air for Genetic Data Sharing

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Public Engagement in Governance of Human Genome Editing in the Post-He Jiankui Era

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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

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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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research

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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”?

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 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 Trainee Networking Session: Working with NHGRI

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: Victims of Eugenic Sterilization in Utah: Demographics and Survivor Estimate

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

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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: Paper Session 3

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: 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

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

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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

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Inequality and Health: Sickle Cell Disease and Food Insecurity during the COVID-19 Pandemic

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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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