Ethical, Societal, and Policy Issues in Germline Gene Editing

Wednesday, November 6 | 9 a.m.–5 p.m.


A variety of stakeholders will present and discuss considerations surrounding germline gene editing, including current legal status for clinical research in the US and throughout the world; recent proposals to limit clinical applications; and potential mechanisms necessary to achieve societal consensus.

Objective: To begin to answer the following questions that arose from the announcement that came in November 2018 regarding the widely condemned clinical use of germline gene editing:

  1. How can future instances be prevented of clear crossing of the line of acceptable practice?
  2. What are possible governance structures and/or processes for prevention and enforcement?
  3. What should the current boundaries be on germline gene editing research, and what factors should be considered before changing limitations?

Full Agenda

Opening Remarks/Review

  • Tim Hunt, J.D.
    Senior Vice President of Corporate Affairs, Editas Medicine
  • Keith Joung, M.D., Ph.D.—Overview of the State of the Science of Somatic Gene Cell Therapies
    Harvard Medical School; Massachusetts General Hospital

The Path Forward

Keynote Speaker: Francis Collins, M.D., Ph.D., Director, NIHThe Need for an International Moratorium on Clinical Uses of Human Germline Gene Editing

Francis Collins, M.D., Ph.D., director of the National Institutes of Health (NIH) and a physician-geneticist, delivers his keynote address, “The Need for an International Moratorium on Clinical Uses of Human Germline Gene Editing,” at the ASGCT Policy Summit on November 6.

"This is a crucial moment in the history of science: a new technology offers the potential to rewrite the script of human life," Collins wrote for Nature with Carrie D. Wolinetz, Ph.D., Associate Director for Science Policy at NIH. "We think that human gene editing for reproductive purposes carries very serious consequences — social, ethical, philosophical and theological. Such great consequences deserve deep reflection. A substantive debate about benefits and risks that provides opportunities for multiple segments of the world’s diverse population to take part has not yet happened."

Collins has served as the director of the NIH since August 2009, and is noted for his landmark discoveries of disease genes and his leadership of the international Human Genome Project, which culminated in April 2003 with the completion of a finished sequence of the human DNA instruction book. He served as director of the National Human Genome Research Institute at NIH from 1993-2008.

  • Françoise Baylis, Ph.D.—Broad Societal Consensus: Public Education, Engagement and Empowerment
    Dalhousie University
  • Peter Mills, Ph.D.
    Assistant Director, Nuffield Council on Bioethics
  • Marcy Darnovsky, Ph.D.—Heritable Genome Editing: Getting Serious About Social Implications
    Executive Director of the Center for Genetics and Society
  • Moderated Panel Discussion

Ethical Perspectives on Germline Gene Editing

  • Fr. Kevin FitzGerald, S.J., Ph.D., Ph.D.—Human Germline Genetic Editing: Rapidly Advancing but Where and to What End?
    Creighton University School of Medicine
  • George J. Annas, Ph.D.—The Bioethics of Germline Gene Editing: Worth the Global Outcry?
    Boston University
  • Tina Rulli, Ph.D.—Reproductive CRISPR Doesn’t Save Lives
    University of California, Davis
  • Moderated Panel Discussion
    Moderator: Fr. FitzGerald

Patient Perspectives

  • Neena Nizar, Ed.D.—Gene Therapy: Finding Balance between Bioethical and Social Issues - A Patient Perspective
    President and Founder, Jansen’s Foundation
  • Andrea Taylor
    President and Founder, A Twist of Fate
  • Moderated Panel Discussion

Approaches to International Governance and Engagement

Keynote Speaker: Margaret Hamburg, M.D., Foreign Secretary of the National Academy of Medicine—WHO Expert Advisory Group on Developing Global Standards and Oversight of Human Genome Editing: An Overview and Update

Margaret Hamburg, M.D., an internationally recognized expert in medicine and public health, is the co-chair of the WHO advisory committee on governance and oversight of human genome editing, and currently serves as both foreign secretary for the National Academy of Medicine and chair of the board of the American Association for the Advancement of Science (AAAS). Hamburg was previously commissioner of the Food and Drug Administration, where she was known for advancing regulatory science, medical product innovation and the globalization of the agency.

  • J. Benjamin Hurlbut, Ph.D.—The Global Observatory
    Arizona State University
  • Moderated Panel Discussion

Rates:

  • Member: $200
  • Non-Member: $250

Register for Day 3 of the
ASGCT Policy Summit

Register today for the Wednesday, Novemeber 6 session, Ethical, Societal, and Policy Issues in Germline Gene Editing, or all of the ASGCT 2019 Policy Summit (a PDF registration form is also available).

Cancellation Policy: Refund requests must be submitted in writing to ASGCT prior to October 21, 2019. A $35 processing fee will be charged for all refunds. We regret refunds cannot be allowed for requests postmarked or received after October 21, 2019.

Special Accommodations: If you require special accommodations under the ADA in order to fully participate in the meeting, please send a written description of your needs to the ASGCT Executive Office. Please notify us of your needs by October 28, 2019.

2019
ASGCT Policy Summit
November 4 – 6 | Washington D.C.
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