Three decades of genetic privacy: a metaphoric journey.
| Title: | Three decades of genetic privacy: a metaphoric journey. |
|---|---|
| Authors: | Knoppers BM; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 av Dr Penfield, Montreal, Quebec H3A 0G1 Canada.; Canada Research Chair in Law and Medicine.; Beauvais MJS; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 av Dr Penfield, Montreal, Quebec H3A 0G1 Canada. |
| Source: | Human molecular genetics [Hum Mol Genet] 2021 Oct 01; Vol. 30 (R2), pp. R156-R160. |
| Publication Type: | Journal Article; Research Support, Non-U.S. Gov't; Review |
| Language: | English |
| Journal Info: | Publisher: IRL Press at Oxford University Press Country of Publication: England NLM ID: 9208958 Publication Model: Print Cited Medium: Internet ISSN: 1460-2083 (Electronic) Linking ISSN: 09646906 NLM ISO Abbreviation: Hum Mol Genet Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: Oxford, England ; New York : IRL Press at Oxford University Press, c1992- |
| MeSH Terms: | Ethics, Clinical*; Genetic Privacy/*ethics; Genetic Privacy/trends ; Human Genome Project ; Humanities ; Humans ; Ownership |
| Abstract: | Debates surrounding genetic privacy have taken on different forms over the past 30 years. Taking genetic privacy to mean an interest that individuals, families, or even communities have with respect to genetic information, we examine the metaphors used in these debates to chronicle the development of genetic privacy. In 1990-2000, we examine claims for ownership and of 'humanity' spurred by the launch of the Human Genome Project and related endeavors. In 2000-2010, we analyze the interface of law and ethics with research infrastructures such as biobanks, for which notions of citizenship and 'public goods' were central. In 2010-2020, we detail the relational turn of genetic privacy in response of large international research consortia and big data. Although each decade had its leading conceptions of genetic privacy, the subject is neither strictly chronological nor static. We conclude with reflections on the nature of genetic privacy and the necessity to bring together the unique and private genetic self with the human other.; (© The Author(s) 2021. Published by Oxford University Press.) |
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| Grant Information: | SBD-163124 Canada CIHR |
| Entry Date(s): | Date Created: 20210622 Date Completed: 20220331 Latest Revision: 20240817 |
| Update Code: | 20260130 |
| PubMed Central ID: | PMC8490012 |
| DOI: | 10.1093/hmg/ddab164 |
| PMID: | 34155499 |
| Database: | MEDLINE |
Journal Article; Research Support, Non-U.S. Gov't; Review