The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research

Conference

2022-05-31

ELSIcon2022 • Paper • May 31, 2022

Laura Beskow, Leslie Wolf

Our previous research demonstrated that precision medicine research implicates numerous state laws, including human subjects research, genetic testing, and both general and genetic privacy and discrimination, that are not preempted by federal law and can substantially alter participant rights and protections in precision medicine research. Thus, the choice of which state’s laws apply, and under what circumstances, can have significant impact on research design and human subjects protections.

However, the traditional route for addressing choice of law issues—contractual agreement—is not available in the context of research, and there has been little attention to how to reconcile state laws in research oversight. The evolving research context, including the federal requirements for single-IRB review, is likely to bring choice of law issues to rapid prominence.

In our NIH-funded exploratory research project, we conducted qualitative interviews with key informants regarding their experiences and opinions regarding choice of law questions in the precision medicine context. We also held workshops with choice of law experts and research law and ethics experts together to identify the factors, including the places associated with precision medicine research, characteristics of participant’ rights and protections, and elements of choice of law frameworks, that are most crucial to account for in a future choice of law precision medicine research framework.

We present the findings from both aims of our research and the implications of that research for future research and development of a framework for addressing choice of law questions in precision medicine research design and consent processes.

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ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research

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Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The lack of a standard definition of clinical utility limits the assessment of the clinical impacts of whole exome/whole genome sequencing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: A Survey on Public Perception toward the Korean National Bio Big Data Project

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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

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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

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: 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

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: 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 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

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 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