A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation
We interviewed professionals and stakeholders in genomic medicine to understand how they envision their field and argue for its importance. Their rhetoric constitutes a shared “genetic imaginary” where genomic medicine is at once exceptional, ordinary, and an ethical obligation. Genomic medicine is...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2022-12-01
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| Series: | SSM: Qualitative Research in Health |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2667321522000828 |
| _version_ | 1811295491588096000 |
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| author | Kasia Tolwinski Diana Madden Jennifer K. Wagner |
| author_facet | Kasia Tolwinski Diana Madden Jennifer K. Wagner |
| author_sort | Kasia Tolwinski |
| collection | DOAJ |
| description | We interviewed professionals and stakeholders in genomic medicine to understand how they envision their field and argue for its importance. Their rhetoric constitutes a shared “genetic imaginary” where genomic medicine is at once exceptional, ordinary, and an ethical obligation. Genomic medicine is argued by our interviewees to be exceptional by virtue of novel scientific knowledge it offers and the resultant effects on clinical practice; ordinary in that it is just another way of understanding the body that leads straightforwardly to the evolution of healthcare; and an ethical obligation because it provides comprehensive insight and care that should be accessible to all people. Despite desires to make genomic medicine diverse, inclusive, and accessible – envisioning it working as a matter of social justice – we argue that there are structural constraints that impede this genetic imaginary from becoming a reality. We argue that genomic medicine must be actively shaped in ways that foster social justice so as not to perpetuate current and historical disparities in medicine. |
| first_indexed | 2024-04-13T05:33:18Z |
| format | Article |
| id | doaj.art-ac7d0a9dcf534acc9eac54babf537d51 |
| institution | Directory Open Access Journal |
| issn | 2667-3215 |
| language | English |
| last_indexed | 2024-04-13T05:33:18Z |
| publishDate | 2022-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | SSM: Qualitative Research in Health |
| spelling | doaj.art-ac7d0a9dcf534acc9eac54babf537d512022-12-22T03:00:22ZengElsevierSSM: Qualitative Research in Health2667-32152022-12-012100120A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligationKasia Tolwinski0Diana Madden1Jennifer K. Wagner2Biomedical Ethics Unit, McGill University, 3546 Rue Peel, Montreal, QC, H3A 1X1, Canada; Corresponding author.Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 E Chicago Ave, Chicago, IL 60611, United StatesSchool of Engineering Design, Technology, and Professional Programs, Pennsylvania State University, 213 Hammond Building, University Park, PA, 16802, United StatesWe interviewed professionals and stakeholders in genomic medicine to understand how they envision their field and argue for its importance. Their rhetoric constitutes a shared “genetic imaginary” where genomic medicine is at once exceptional, ordinary, and an ethical obligation. Genomic medicine is argued by our interviewees to be exceptional by virtue of novel scientific knowledge it offers and the resultant effects on clinical practice; ordinary in that it is just another way of understanding the body that leads straightforwardly to the evolution of healthcare; and an ethical obligation because it provides comprehensive insight and care that should be accessible to all people. Despite desires to make genomic medicine diverse, inclusive, and accessible – envisioning it working as a matter of social justice – we argue that there are structural constraints that impede this genetic imaginary from becoming a reality. We argue that genomic medicine must be actively shaped in ways that foster social justice so as not to perpetuate current and historical disparities in medicine.http://www.sciencedirect.com/science/article/pii/S2667321522000828Genomic medicineGeneticsGenetic exceptionalismSocial justiceDiversity |
| spellingShingle | Kasia Tolwinski Diana Madden Jennifer K. Wagner A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation SSM: Qualitative Research in Health Genomic medicine Genetics Genetic exceptionalism Social justice Diversity |
| title | A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation |
| title_full | A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation |
| title_fullStr | A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation |
| title_full_unstemmed | A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation |
| title_short | A genetic imaginary for social justice: The rhetoric of genomic medicine as exceptional, ordinary, and ethical obligation |
| title_sort | genetic imaginary for social justice the rhetoric of genomic medicine as exceptional ordinary and ethical obligation |
| topic | Genomic medicine Genetics Genetic exceptionalism Social justice Diversity |
| url | http://www.sciencedirect.com/science/article/pii/S2667321522000828 |
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