This ELSI Friday Forum took place on June 9, 2023.
Rapid growth in genetic understanding presents challenges for expectant parents, now
complicated by the Dobbs decision’s removal of federal constitutional protection for private reproductive decision-making. This panel will discuss two emerging issues for genetic information after Dobbs: prenatal gene therapy and law enforcement access to DNA repositories from residual newborn screening. Alta Charo, bioethics consultant and professor emerita at the University of Wisconsin, considered the novel possibility of prenatal gene therapy. Complicated by issues of prenatal surgery, prenatal gene therapy adds questions about risk and benefit for first in human studies using a rapidly evolving technology. After Dobbs, the growing absence of legal abortion affects the risk/benefit calculus for parents in accepting this intervention, if termination is no longer available in the event of a failed effort that threatens to result in a severely impaired newborn. Natalie Ram, health law expert at the University of Maryland, considered how increasing interest in expanding newborn screening to whole genome or whole exome sequencing risks making this resource that much more attractive for law enforcement. Privacy protections are often lacking, police operate without significant legal constraints on their use of consumer genetic data, and some states offer inadequate protection from access for newborn screening resources. Legislation in Maryland on consumer genetics and in Iowa on newborn screening samples are models for policymakers in regulating law enforcement use of these genetic resources.
- Natalie Ram, JD (University of Maryland)
- R. Alta Charo, JD (University of Wisconsin-Madison)
- Moderated by Leslie Francis, PhD, JD (University of Utah)
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Videos in Series

ELSI Friday Forum - Population Descriptors in Genomic Research: Applying the NASEM Recommendations

ELSI Friday Forum - Value and Values in Payment for Gene Therapies

ELSI Friday Forum - Visual Storytelling in ELSI Research

ELSI Friday Forum - Indigenizing Genomics and Advancing Indigenous Data Sovereignty

ELSI Friday Forum - Wrestling with Social and Behavioral Genomics

ELSI Friday Forum - Genetic Advantages in Sports: When Do They Count as "Doping"?

ELSI Friday Forum - Genetics and AI: Group Privacy and Fairness

ELSI Friday Forum - Advocacy and Allyship in ELSI: Opportunities and Challenges

ELSI Friday Forum - Decoloniality and Genetic Ancestry: Situating the "African Genome"

ELSI Friday Forum - Legal Challenges to Newborn Screening Research

ELSI Friday Forum - Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice

ELSI Friday Forum - Addressing Algorithmic Harms: Practices and Provocations for Health AI

ELSI Friday Forum - Balancing Data Privacy and Data Sharing: Normative and Technical Approaches

ELSI Friday Forum - Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies

ELSI Friday Forum - Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics

ELSI Friday Forum - New ACMG Guidance on Carrier Screening: More or Less Equitable?

ELSI Friday Forum - Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean?
ELSI Friday Forum - Genomic Data Sharing: Putting Principles and Policy into Practice
ELSI Friday Forum - Current Legal Challenges to Abortion: Implications for Prenatal Genetics
ELSI Friday Forum - Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease

ELSI Friday Forum - Widening the Lens: Using Arts in ELSI Research

ELSI Friday Forum - Migrant DNA: Context, Ethics and Legal Issues

ELSI Friday Forum - Genomics and Infectious Disease: Scientific and ELSI Issues of COVID

ELSI Friday Forum - ELSI Friday Forum: Biobanking in the Era of COVID

ELSI Friday Forum - Addressing Racism in Research and Clinical Practice
