ELSI Friday Forum on Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions on September 8, 2023, at 12pm ET / 9am PT. Panelists include: Ingrid Holm and Alison Bateman-House, moderated by Meghan Halley.

ELSI Friday Forum Seminar Series


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).

If you have any questions, including requests regarding accessibility, please email [email protected].

Continue the conversation in an informal Post Forum Discussion in a separate Zoom meeting immediately following each Forum. The link will be placed in the Zoom Chat during the Forum. Please email [email protected] if you have any difficulty accessing the link.

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.

By registering for an ELSIhub event, attendees agree to abide by the ELSIhub Code of Conduct:

2023-2024 SERIES

Save the dates and register in advance! The 2023-2024 ELSI Friday Forum Series will be held virtually on the second Friday of each month starting 12:00pm ET / 9:00am PT: 

September 8, 2023 – Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions – Click here to register

  • Ingrid Holm, MD, MPH (Boston Children's Hospital, Harvard Medical School)
  • Alison Bateman-House, MPH, PhD (NYU Langone Health, University of Arizona)
  • Moderated by Meghan Halley, PhD, MPH (Stanford University)

2022-2023 SERIES

July 14, 2023 – Population Descriptors in Genomic Research: Applying the NASEM Recommendations – Watch the recording here

  • 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 – Watch the recording here

  • 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 – Watch the recording here

  • 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 – Watch the recording here

  • 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? – Watch the recording 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 – Watch the recording here

  • 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 – Watch the recording here

  • Benjamin M. Neale, PhD (Massachusetts General Hospital, Harvard Medical School, Broad Institute)
  • Evelynn Hammonds, PhD (Harvard University)
  • Moderated by Michelle N. Meyer, PhD, JD (Geisinger College of Health Sciences) and Erik Parens, PhD (The Hastings Center)

December 9, 2022 – Genetic Advantages in Sports: When Do They Count as "Doping"?  – Watch the recording here

  • Sarah Polcz, JSD, MSc, JD (Stanford Law School)
  • Silvia Camporesi, PhD, PhD (King's College London, University of Vienna)
  • Moderated by Thomas H. Murray, PhD (The Hastings Center)

November 11, 2022 – Genetics and AI: Group Privacy and Fairness Watch the recording here

  • Anya Prince, JD, MPP (University of Iowa College of Law)
  • Sandra Wachter, PhD, LLM (University of Oxford)
  • Moderated by Nicholson Price, JD, PhD (University of Michigan Law School)

October 14, 2022 – Advocacy and Allyship in ELSI: Opportunities and Challenges Watch the recording here

  • Kyle Brothers, MD, PhD (Norton Children’s Research Institute & University of Louisville)
  • Shoumita Dasgupta, PhD (Boston University School of Medicine)
  • Moderated by Robert Cook-Deegan, MD (Arizona State University)

September 9, 2022 – Decoloniality and Genetic Ancestry: Situating the “African Genome” Watch the recording here

  • Alice Matimba, PhD, MS (Wellcome Connecting Science)
  • Palwendé R. Boua, PhD (Institut de Recherche en Sciences de la Santé-DRCO, Burkina Faso)
  • Moderated by Henri-Michel Yéré, PhD, MA (University of Basel)

2021-2022 SERIES

    July 8, 2022 – Legal Challenges to Newborn Screening Research  Watch the recording here

    • Eric Hendricks, JD (Michigan Department of HHS)
    • Aaron Goldenberg, PhD (Case Western University)
    • Moderated by Natasha Bonhomme (Expecting Health)

    June 17, 2022  Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice Watch the recording here

    • Michelle McGowan, PhD (Cincinnati Children's)
    • Aarti Ramdaney, MS, CGC (UTHealth Houston)
    • Moderated by Kimberly Mutcherson, JD (Rutgers Law School)

    May 13, 2022  Addressing Algorithmic Harms: Practices and Provocations for Health AI Watch the recording here

    • I. Glenn Cohen, JD (Harvard University)
    • Melissa McCradden, PhD (University of Toronto)
    • Moderated by Kayte Spector-Bagdady, JD (University of Michigan)

    April 8, 2022 – Balancing Data Privacy and Data Sharing: Normative and Technical Approaches Watch the recording here

    • Bradley Malin, PhD (Vanderbilt University)
    • Effy Vayena, PhD (ETH Zurich)
    • Moderated by Lucila Ohno-Machado, MD, PhD (UC San Diego)

    March 11, 2022 – Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation Watch the recording here

    • Julia Wynn, MS, CGC (Columbia University)
    • Holly Tabor, PhD (Stanford University)
    • Moderated by Wendy Chung, MD (Columbia University)

    February 11, 2022 Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies  Watch the recording here

    • Lara Choksey, PhD (University College London)
    • Lesley Larkin, PhD (Northern Michigan University)
    • Moderated by Rebecca Wilbanks, PhD (Johns Hopkins University)

    January 14, 2022  Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics – Watch the recording here

    • Emily Klancher Merchant, PhD (University of California, Davis)
    • Lisa Dive, PhD (University of Sydney)
    • Moderated by Osagie Obasogie, JD, PhD (University of California, Berkeley)

    December 10, 2021 - New ACMG Guidance on Carrier Screening: More or Less Equitable? Watch the recording here

    • Blair K. Stevens, MS, CGC (University of Texas Health)
    • Katie Stoll, MS, CGC (Genetic Support Foundation)
    • Moderated by Maya Sabatello, LLB, PhD (Columbia University)

    November 12, 2021 - Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean? Watch the recording here

    • Nchangwi Munung, PhD (University of Capetown)
    • Michèle Ramsay, PhD (University of the Witwatersand)
    • Moderated by Jantina De Vries, PhD (University of Capetown)

    October 8, 2021 - Genomic Data Sharing: Putting Principles and Policy into Practice – Watch the recording here 

    • Heidi Rehm, PhD (Massachusetts General Hospital)
    • Keolu Fox, PhD (UC San Diego)
    • Moderated by Malia Fullerton, PhD (University of Washington)

    September 10, 2021 - Remembering 9/11: Ethical, Legal and Social Issues with Using DNA for Disaster Victim Identification  Watch the recording here 

      • Amy Mundorff, PhD (University of Tennessee)
      • Jay Aronson, PhD (Carnegie Mellon University)
      • Moderated by Jennifer Wagner, JD, PhD (Penn State University)

      2020-2021 SERIES

      July 9, 2021 - Current Legal Challenges to Abortion: Implications for Prenatal Genetics Watch the recording here 

        • Ellen Wright Clayton, MD, JD (Vanderbilt University Medical Center)
        • Marsha Michie, PhD (Case Western University)
        • Moderated by Laura Hercher, MA, MS (Sarah Lawrence College)

        June 11, 2021 - Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease –  Watch the recording here

          • Liza-Marie Johnson, MD, MPH, MSB (St. Jude Children's Research Hospital)
          • Melissa Creary, PhD, MPH (University of Michigan)
          • Moderated by Pilar Ossorio, JD, PhD (UW-Madison)

          May 14, 2021 - Genomics and Data Sovereignty: Policy and Deliberative Approaches for Engaging Indigenous Communities Watch the recording here

          • Stephanie Russo Carroll, DrPH (University of Arizona)
          • Justin Lund, MA (The University of Oklahoma)
          • Moderated by Nanibaa’ Garrison, PhD (UCLA Med School)

          April 9, 2021 Widening the Lens: Using Arts in ELSI Research – Watch the recording here

          • Sydney Cheek-O'Donnell, PhD (University of Utah)
          • Erin Talati Paquette, MD, JD (University of Utah)
          • Erin Rothwell, PhD (Northwestern University)
          • Moderated by Maya Sabatello, LLB, PhD (Columbia University)

          March 12, 2021 - Migrant DNA: Context, Ethics and Legal Issues - Watch the recording here

          • Sara Katsanis, MS (Northwestern University)
          • Vera Eidelman, JD (American Civil Liberties Union)
          • Moderated by Paul Appelbaum, MD (Columbia University)

          February 12, 2021 -  Genomics and Infectious Disease: Scientific and ELSI Issues of COVID - Watch the recording here.

          • Gail Geller, ScD, MHS (Johns Hopkins University)
          • Priya Duggal, PhD (Johns Hopkins University)
          • Moderated by Holly Taylor, PhD, MPH (National Institutes of Health)

          January 8, 2021 - Biobanking in the Era of COVID - Watch the recording here

          • Sara Chandros Hull, PhD (National Human Genome Research Institute)
          • Kyle Brothers, MD, PhD (University of Louiseville)
          • Moderated by Aaron Goldenberg, PhD (Case Western University)

          December 11, 2020 - Addressing Racism in Research and Clinical Practice - Watch the recording here.

          • Rhea Boyd, MD, MPH (California Children's Trust)
          • Robert D. Steiner, MD (Genetics in Medicine)
          • Daphne Martschenko, PhD (Stanford University)
          • Moderated by Mildred Cho, PhD (Stanford University)

          November 13, 2020 - Structural Racism and Genomics in the Time of COVID - Watch the recording here.

          • Dayna Bowen Matthew, JD, PhD (George Washington University Law School)
          • Vence L. Bonham, Jr, JD (National Human Genome Research Institute)
          • Moderated by Sandra Soo-Jin Lee, PhD (Columbia University)