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

Conference

2022-05-31

ELSIcon2022 • Paper • May 31, 2022

Sandra Soo-Jin Lee, Jessica Martucci, Yolanda Prado, Tia Kauffman, Larissa White, Nora Henrikson, Heather Feigelson, Jessica Hunter

Current guidelines recommend genetic testing for all cases of ovarian cancer. Cancer risk variant detection can lead to identification of additional biological relatives who also carry the variant (i.e., cascade testing) which can facilitate timely intervention for early cancer detection and prevention. Individuals with a prior diagnosis of ovarian cancer who did not receive genetic testing represent missed opportunities to identify families with cancer risk variants. Germline genetic testing of archived surgical pathology specimens allows the opportunity to provide relatives with genetic risk information even when the individual is deceased. This approach raises ethical and legal questions about patient privacy vs. the benefit of providing relatives with genetic risk information. The Genetic Risk Assessment in Ovarian CancEr (GRACE) study is using a “traceback testing” approach to offer genetic testing to individuals with a prior diagnosis of ovarian cancer and their relatives. To date, uptake rates for genetic testing in ovarian cancer survivors (28%) and cascade testing among relatives (50%) indicates strong interest in receipt of genetic risk information and has led to identification of 8 families with cancer risk variants. One study aim is to explore the feasibility of providing genetic risk information to relatives of individuals who are deceased. In this effort, we have faced numerous legal and organizational challenges to contacting relatives. In this presentation, we will describe practical barriers to contacting and consenting at-risk family members through traceback testing and discuss the ethics of disclosing potentially life-saving information in the context of privacy restrictions.

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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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Videos in Series

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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: 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 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 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 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 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

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

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 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