Ethical considerations in research with genomic data
Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We d...
| Main Authors: | , |
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| Format: | Journal article |
| Language: | English |
| Published: |
Taylor & Francis
2022
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| _version_ | 1797113212807675904 |
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| author | Horton, R Lucassen, A |
| author_facet | Horton, R Lucassen, A |
| author_sort | Horton, R |
| collection | OXFORD |
| description | Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices. |
| first_indexed | 2024-03-07T08:27:18Z |
| format | Journal article |
| id | oxford-uuid:30780636-9b2b-47f3-9267-54d7b77070f6 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-04-23T08:25:14Z |
| publishDate | 2022 |
| publisher | Taylor & Francis |
| record_format | dspace |
| spelling | oxford-uuid:30780636-9b2b-47f3-9267-54d7b77070f62024-04-18T15:47:04ZEthical considerations in research with genomic dataJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:30780636-9b2b-47f3-9267-54d7b77070f6EnglishSymplectic ElementsTaylor & Francis2022Horton, RLucassen, AOur ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices. |
| spellingShingle | Horton, R Lucassen, A Ethical considerations in research with genomic data |
| title | Ethical considerations in research with genomic data |
| title_full | Ethical considerations in research with genomic data |
| title_fullStr | Ethical considerations in research with genomic data |
| title_full_unstemmed | Ethical considerations in research with genomic data |
| title_short | Ethical considerations in research with genomic data |
| title_sort | ethical considerations in research with genomic data |
| work_keys_str_mv | AT hortonr ethicalconsiderationsinresearchwithgenomicdata AT lucassena ethicalconsiderationsinresearchwithgenomicdata |