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Is Human Genome Editing Ethical?

Posted by nte on October 15, 2019 in In Action
Photo credit: ASRM
Photo credit: ASRM

Speaker: Françoise Baylis, University Resarch Professor, Dalhousie UniversityMember, Order of Canada • Member, Order of Nova Scotia • Fellow, Royal Society of Canada • Fellow, Canadian Academy of Health Sciences

Tues. 15 Oct 2019 (8:30AM-9:15AM)
American Society for Reproductive Medicine Annual Scientific Congress & Expo, 2019
Pennsylvania Convention Center, 1101 Arch Street Philadelphia, PA

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In late November 2018, the world learned that twin girls Lulu and Nana (pseudonyms) were created from embryos that had been genetically modified to provide them with resistance to HIV. The birth announcement was greeted with swift and near uniform condemnation. Among those who objected were many who quoted from the 2015 Summit Statement, On Human Gene Editing, according to which “It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved…and (ii) there is broad societal consensus about the appropriateness of the proposed application.” At the same time, others sought to assure the public that the Chinese researcher who created the gene-edited babies was an irresponsible scientist; rather, the responsible members of the scientific community could be trusted to do “well” what he had done “poorly.” The 2018 Summit Statement, On Human Genome Editing II, stated “the procedure was irresponsible and failed to conform with international norms.” The Summit-organizing committee then identified the need for a translational pathway that would include the following criteria: “strict independent oversight, a compelling medical need, an absence of reasonable alternatives, a plan for long-term follow-up, and attention to societal effects.” Each of these proposed criteria will be interrogated through arguing the pros and cons associated with the proposed transitional pathway, identifying the elements of “broad societal consensus” on the use of this technology, and encouraging to develop one’s own professional opinion on the ethics of heritable human genome editing. Targeted to physicians, bioethicists, embryologists, scientists, nurses, mental health professionals, genetic counselors, legal professionals, social workers, and all levels of clinic staff in reproductive medicine, this presentation therefore serves as a guide to reflect carefully on the ethics of heritable human genome editing. ACGME Competency Medical Knowledge Learning Objectives At the conclusion of this session, participants should be able to: 1. Identify the elements of broad societal consensus. 2. Summarize the elements of the proposed translational pathway for heritable human genome editing. 3. Describe the problems with the proposed translational pathway for heritable human genome editing. 4. Develop a professional opinion on the