ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical, legal, and social implications (ELSI) of genetics and genomics research. Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues, explored through an ELSI lens.
Each hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion. A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. Each forum will end with a Q&A with the audience and speakers: please bring your questions, expertise, and opinions to the debate! For those who cannot attend the live event, each session will be recorded and archived on the ELSIhub Video page (recording links are also available below).
Join us on December 8, 2023 12:00 PM for the next ELSI Friday Forum: Affirming Sex and Gender Diversity in Genetics Practices, Policies, and Law: A Call to Action
Join panelists: Kimberly Zayhowski, MS, CGC, and Kellan Baker, PhD, MPH, MA. Moderated by Mildred Cho, PhD.
There are already many barriers to appropriate health care for transgender, gender diverse, and intersex (TGDI) communities. The recent surge in bills and legislation in the US targeting access to age-appropriate and affirming health care for TGDI individuals is a direct threat to the health, autonomy, and well-being of TGDI people and also threatens to undermine accurate genetic risk assessment, patient care, and genomics research. Beyond banning best-practice care for these communities, these laws weaponize genetics against TGDI people by falsely conflating sex chromosomes with outdated binary concepts of sex and gender. Fear of discrimination drives TGDI people to avoid clinical encounters and research participation, which leads to incomplete and inaccurate genetic data. This session will discuss responsibilities and actions of researchers and clinicians to support gender-affirming health care and research for TGDI people nationwide.
November 10, 2023 - The Genomics of PTSD Risk: Scientific and Ethical Perspectives
Post-traumatic stress disorder (PTSD) can develop following a traumatic event such as natural disaster, sexual or physical assault, or war. Not all people exposed to the same trauma will develop PTSD—rates differ based on the nature of the exposure but also environmental and genetic factors. Using genomics to identify those most at risk for PTSD and better understanding its etiologic pathways could help clinicians and others, including the military, to better treat, prevent, and minimize risk for the disorder. But the use of genomic screening to predict PTSD risk in occupational contexts like military service also raises ethical challenges. Drawing on research with the US VA’s Million Veterans Program, this webinar explores the scientific and medical promise of PTSD genomics and the ethics of using genetic markers for PTSD vulnerability and resilience in high-risk occupational contexts like the military.
Murray B. Stein, MD, MPH (University of California San Diego, VA San Diego Healthcare System)
Eric Juengst, PhD, MA (University of North Carolina at Chapel Hill)
Moderated by Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago)
September 8, 2023 – Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions
Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized therapies—including antisense oligonucleotides and others that may be developed—refer to products designed to treat one to a few individuals based on their specific molecular diagnosis. This technology offers a particularly exciting opportunity for patients with so-called “n-of-1” or “ultrarare” diseases, which lack incentives for drug development through traditional pathways. However the high cost of development and inherently small number of patients eligible to receive each new therapy raise complex ethical concerns related to equity and access. How should research resources be allocated across the many thousands of ultrarare diseases eligible for this approach? Within disease communities, how should the specific gene targets be selected, and who should make these decisions? When and how should additional eligible patients be allowed to access newly developed therapies? Further, given the highly technical nature of the development process, will it ever be possible to safely expand access outside of elite academic medical centers? In this ELSI Friday Forum, we explore these and other ethical considerations arising in this new therapeutic landscape.
- Ingrid Holm, MD, MPH (Boston Children's Hospital, Harvard Medical School)
- Alison Bateman-House, MPH, PhD (NYU Langone Health)
- Moderated by Meghan Halley, PhD, MPH (Stanford University)
July 14, 2023 - Population Descriptors in Genomic Research: Applying the NASEM Recommendations
History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the NIH commissioned a NASEM study on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research to determine if and when race, ethnicity, ancestry, and other population descriptors should be used and why. In this ELSI Friday Forum, NASEM committee members discussed the report’s recommendations. What are population descriptors? How can their selection entrench typological thinking and undermine scientific rigor? How can we better align the appropriate use of population descriptors with genomic research objectives?
- Ann Morning, PhD (New York University)
- Molly Przeworski, PhD (Columbia University)
- Moderated by Dorothy Roberts, JD (University of Pennsylvania)
June 9, 2023 – Legal and Policy Challenges to Privacy in the Post-Genomic and Post-Dobbs Era
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)
May 12, 2023 – Value and Values in Payment for Gene Therapies
- Renske M.T. ten Ham, PhD, PharmD, MSc (The University Medical Center Utrecht)
- R. Brett McQueen, PhD (University of Colorado Anschutz Medical Campus)
- Moderated by Hadley S. Smith, PhD, MPSA (Harvard Medical School, Harvard Pilgrim Health Care Institute)
April 14, 2023 – Visual Storytelling in ELSI Research
- Elizabeth Gross Cohn, PhD, RN, FAAN (City University of New York, Columbia University)
- Gary Ashwal, MA (Booster Shot Media)
- Moderated by Sara Ackerman, PhD, MPH (University of California - San Francisco)
March 10, 2023 – The Genie Is Out of the Bottle for Polygenic Screening of Embryos: Where To From Here?
- Francesca Forzano, MD, FRCP (Guy's & St. Thomas' NHS Foundation Trust, King's College London)
- Gabriel Lázaro-Muñoz, PhD, JD (Harvard Medical School)
- Moderated by Anna Lewis, DPhil (Harvard University, Brigham and Women's Hospital)
February 10, 2023 – Indigenizing Genomics and Advancing Indigenous Data Sovereignty
- Phillip Wilcox, BForSci (Hons), PhD (University of Otago)
- Krystal Tsosie, PhD, MPH, MA (Arizona State University, Native BioData Consortium)
- Moderated by Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago)
January 13, 2023 – Wrestling with Social and Behavioral Genomics
Terms and Conditions
By registering for an ELSIhub event, attendees agree to abide by the ELSIhub Code of Conduct: https://elsihub.org/news/code-conduct
For those who cannot attend the live event, the Forum will be recorded and archived on the ELSIhub Video page. Closed captioning and/or transcripts will be provided for live and recorded events.
If you have any questions, including requests regarding accessibility, please email us at: [email protected].