Rapid challenges: ethics and genomic neonatal intensive care
Neonatal intensive care units (NICUs) are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine’s ‘critical application’, providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple cent...
| Main Authors: | , , , , |
|---|---|
| Format: | Journal article |
| Published: |
American Academy of Pediatrics
2019
|
| _version_ | 1797100144503554048 |
|---|---|
| author | Gyngell, C Stark, Z Newsond, A Wilkinson, D Savulescu, J |
| author_facet | Gyngell, C Stark, Z Newsond, A Wilkinson, D Savulescu, J |
| author_sort | Gyngell, C |
| collection | OXFORD |
| description | Neonatal intensive care units (NICUs) are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine’s ‘critical application’, providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centres worldwide have now demonstrated the clinical utility and cost-effectiveness of rapid genomic sequencing in this setting, paving the way for widespread implementation. However, the introduction of this potentially powerful tool for predicting future impairment in the NICU also raises profound ethical challenges. Developing models of good practice that incorporate the identification, exploration and analysis of ethical issues will be critical for successful implementation. In this paper, we analyse three such issues: 1) the value and meaning of gaining consent to a complex test in a stressful, emotionally-charged environment; 2) the effect of rapid diagnosis on parent-child bonding and its implications for medical and family decisions, particularly in relation to treatment limitation; and 3) distributive justice - whether the substantial cost and diversion of resources to deliver rapid genomic testing in the NICU can be justified. |
| first_indexed | 2024-03-07T05:33:36Z |
| format | Journal article |
| id | oxford-uuid:e31eb49c-c2a4-4dfc-b90b-2f9dc7cdaee8 |
| institution | University of Oxford |
| last_indexed | 2024-03-07T05:33:36Z |
| publishDate | 2019 |
| publisher | American Academy of Pediatrics |
| record_format | dspace |
| spelling | oxford-uuid:e31eb49c-c2a4-4dfc-b90b-2f9dc7cdaee82022-03-27T10:06:37ZRapid challenges: ethics and genomic neonatal intensive careJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:e31eb49c-c2a4-4dfc-b90b-2f9dc7cdaee8Symplectic Elements at OxfordAmerican Academy of Pediatrics2019Gyngell, CStark, ZNewsond, AWilkinson, DSavulescu, JNeonatal intensive care units (NICUs) are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine’s ‘critical application’, providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centres worldwide have now demonstrated the clinical utility and cost-effectiveness of rapid genomic sequencing in this setting, paving the way for widespread implementation. However, the introduction of this potentially powerful tool for predicting future impairment in the NICU also raises profound ethical challenges. Developing models of good practice that incorporate the identification, exploration and analysis of ethical issues will be critical for successful implementation. In this paper, we analyse three such issues: 1) the value and meaning of gaining consent to a complex test in a stressful, emotionally-charged environment; 2) the effect of rapid diagnosis on parent-child bonding and its implications for medical and family decisions, particularly in relation to treatment limitation; and 3) distributive justice - whether the substantial cost and diversion of resources to deliver rapid genomic testing in the NICU can be justified. |
| spellingShingle | Gyngell, C Stark, Z Newsond, A Wilkinson, D Savulescu, J Rapid challenges: ethics and genomic neonatal intensive care |
| title | Rapid challenges: ethics and genomic neonatal intensive care |
| title_full | Rapid challenges: ethics and genomic neonatal intensive care |
| title_fullStr | Rapid challenges: ethics and genomic neonatal intensive care |
| title_full_unstemmed | Rapid challenges: ethics and genomic neonatal intensive care |
| title_short | Rapid challenges: ethics and genomic neonatal intensive care |
| title_sort | rapid challenges ethics and genomic neonatal intensive care |
| work_keys_str_mv | AT gyngellc rapidchallengesethicsandgenomicneonatalintensivecare AT starkz rapidchallengesethicsandgenomicneonatalintensivecare AT newsonda rapidchallengesethicsandgenomicneonatalintensivecare AT wilkinsond rapidchallengesethicsandgenomicneonatalintensivecare AT savulescuj rapidchallengesethicsandgenomicneonatalintensivecare |