Larry Au (Author)
He Jiankui announced to the world in November 2018 that his team had genetically edited twin human embryos that were then brought to term. Recruiting participants through an HIV outreach group and using CRISPR/Cas9 technology, He targeted the CCR5 genes claiming this would make the children immune to HIV. One way to understand He’s case is through Charis Thompson’s concept of ethical choreography, which shows how scientists ‘invent around’ potential ethical objections to their work. In particular, such a focus on ethical choreography traces how individual scientists can exploit ambiguity in institutional boundaries to recombine different logics to advance their vision of good, innovative, and ethical science. He’s actions can be seen to been the result of his traversal of blurred boundaries that demarcate science/market and science/medicine in order to recombine academic, market, medical, and cultural logics. This combination of logics is seen in ethical justifications that He put forth for his experiment, which provoked much criticism and controversy, but should nonetheless be taken seriously and placed in context. While He’s vision of good science was rejected, examples of ethical choreography can be found in other instances of biomedical innovation and there remains the potential for other scientists to pick up where He left off. Following the ethical choreography of scientists also allows for more specificity in discussions about what and when boundaries should be strengthened or relaxed in order to advance a more equitable vision of science and technology.
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The Human Gene Editing Debate
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Genomic Citizenship: The Molecularization of Identity in the Contemporary Middle East
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The Genealogy of a Gene: Patents, HIV/AIDS, and Race
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Ramya M. Rajagopalan;
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Race, Ethnicity, Ancestry, and Genomics in Hawai‘i: Discourses and Practices
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Taking responsibility, making irresponsibility: Controversies in human gene editing
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Fortun, Mike;
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Promising Genomics: Iceland and deCODE Genetics in a World of Speculation
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Homo adhaerens: Risk and adherence in biomedical HIV prevention research
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Lino Camprubi;
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Sociedad Entre Pandemias
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Sclater, Shelley Day;
Richards, Martin;
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Body Lore and Laws
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Genetics and the Value of Life: Historical Dimensions
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Katherine W. Darling;
Angie M. Boyce;
Mildred K. Cho,;
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“What Is the FDA Going to Think?” Negotiating Values through Reflective and Strategic Category Work in Microbiome Science
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Vivette García-Deister;
Edna Suárez-Díaz;
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Flattening and Unpacking Human Genetic Variation in Mexico, Postwar to Present
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Guido Barbujani;
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Sarah S. Richardson;
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Postgenomics: Perspectives on Biology after the Genome
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The Bricolage of Pig Genomics
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The Genealogical Science: The Search for Jewish Origins and the Politics of Epistemology
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