A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine
Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scien...
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2024-12-01
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| Series: | Journal of Responsible Innovation |
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| Online Access: | https://www.tandfonline.com/doi/10.1080/23299460.2024.2413698 |
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| author | James Karabin Chessa Adsit-Morris Sandra Soo-Jin Lee Stephanie M. Fullerton Mildred K. Cho Jenny Reardon |
| author_facet | James Karabin Chessa Adsit-Morris Sandra Soo-Jin Lee Stephanie M. Fullerton Mildred K. Cho Jenny Reardon |
| author_sort | James Karabin |
| collection | DOAJ |
| description | Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In particular, we conduct a conjunctural analysis that draws attention to contests and struggles over the forms and meanings of good science – in this case, genomics – and the role(s) of ELSI scholars and researchers in producing good science. We demonstrate that the embedded ELSI approach emerged from these contests, which left ELSI research and interventions constrained – institutionally, topically, and methodologically. We end by calling for an opening up of embedded approaches to integration so that they might better meet calls for justice and equity in the present conjuncture. |
| format | Article |
| id | doaj-art-b4b5a7bbab0848e3b718858f604e61e2 |
| institution | Kabale University |
| issn | 2329-9460 2329-9037 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | Journal of Responsible Innovation |
| spelling | doaj-art-b4b5a7bbab0848e3b718858f604e61e22025-01-07T13:48:20ZengTaylor & Francis GroupJournal of Responsible Innovation2329-94602329-90372024-12-0111110.1080/23299460.2024.2413698A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicineJames Karabin0Chessa Adsit-Morris1Sandra Soo-Jin Lee2Stephanie M. Fullerton3Mildred K. Cho4Jenny Reardon5Department of Sociology, University of California, Santa Cruz, CA, USADepartment of History of Art and Visual Culture, University of California, Santa Cruz, CA, USADivision of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USADepartment of Bioethics & Humanities, School of Medicine, University of Washington, Seattle, WA, USAStanford Center for Biomedical Ethics, Stanford University, Stanford, CA, USADepartment of Sociology, University of California, Santa Cruz, CA, USACalls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In particular, we conduct a conjunctural analysis that draws attention to contests and struggles over the forms and meanings of good science – in this case, genomics – and the role(s) of ELSI scholars and researchers in producing good science. We demonstrate that the embedded ELSI approach emerged from these contests, which left ELSI research and interventions constrained – institutionally, topically, and methodologically. We end by calling for an opening up of embedded approaches to integration so that they might better meet calls for justice and equity in the present conjuncture.https://www.tandfonline.com/doi/10.1080/23299460.2024.2413698Embedded ethicsELSIgenomicsconjunctureintegrationjustice |
| spellingShingle | James Karabin Chessa Adsit-Morris Sandra Soo-Jin Lee Stephanie M. Fullerton Mildred K. Cho Jenny Reardon A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine Journal of Responsible Innovation Embedded ethics ELSI genomics conjuncture integration justice |
| title | A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine |
| title_full | A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine |
| title_fullStr | A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine |
| title_full_unstemmed | A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine |
| title_short | A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine |
| title_sort | conjunctural analysis of the origins of embedded elsi in u s genomic medicine |
| topic | Embedded ethics ELSI genomics conjuncture integration justice |
| url | https://www.tandfonline.com/doi/10.1080/23299460.2024.2413698 |
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