Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges
Ultra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2023-05-01
|
| Series: | Children |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2227-9067/10/5/824 |
| _version_ | 1797600651443699712 |
|---|---|
| author | Katie Arkell Christopher Gyngell Zornitza Stark Danya F. Vears |
| author_facet | Katie Arkell Christopher Gyngell Zornitza Stark Danya F. Vears |
| author_sort | Katie Arkell |
| collection | DOAJ |
| description | Ultra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly when making treatment decisions. Four focus groups and two interviews were conducted with HPs who had experience using urGS in NICU/PICU. Inductive content analysis was used to analyze the data. Nineteen HPs participated overall (eight clinical geneticists, nine genetic counselors, and two intensivists). One challenging area of practice identified by HPs was setting realistic expectations for outcomes of urGS among HPs and families. HPs reported modifying pre-test counseling to include life-limiting diagnoses as a possible test outcome and felt concerned about the timing of the test and its impact on parent–child bonding. UrGS results of uncertain prognostic significance posed considerable challenges. Moral distress arose when families and HPs were misaligned regarding treatment goals following the urGS diagnosis. We identified areas of practice that remain ethically challenging for HPs using urGS in the NICU/PICU. HPs experiences of using urGS in the NICU/PICU could inform specialized training in withdrawal of treatment decision making for the genomics workforce. |
| first_indexed | 2024-03-11T03:50:51Z |
| format | Article |
| id | doaj.art-81f86040a7884abea91015bc5150c2cf |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-11T03:50:51Z |
| publishDate | 2023-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-81f86040a7884abea91015bc5150c2cf2023-11-18T00:55:26ZengMDPI AGChildren2227-90672023-05-0110582410.3390/children10050824Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical ChallengesKatie Arkell0Christopher Gyngell1Zornitza Stark2Danya F. Vears3Biomedical Ethics Research Group, Murdoch Children’s Research Institute, Parkville, VIC 3052, AustraliaBiomedical Ethics Research Group, Murdoch Children’s Research Institute, Parkville, VIC 3052, AustraliaDepartment of Paediatrics, The University of Melbourne, Parkville, VIC 3052, AustraliaBiomedical Ethics Research Group, Murdoch Children’s Research Institute, Parkville, VIC 3052, AustraliaUltra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly when making treatment decisions. Four focus groups and two interviews were conducted with HPs who had experience using urGS in NICU/PICU. Inductive content analysis was used to analyze the data. Nineteen HPs participated overall (eight clinical geneticists, nine genetic counselors, and two intensivists). One challenging area of practice identified by HPs was setting realistic expectations for outcomes of urGS among HPs and families. HPs reported modifying pre-test counseling to include life-limiting diagnoses as a possible test outcome and felt concerned about the timing of the test and its impact on parent–child bonding. UrGS results of uncertain prognostic significance posed considerable challenges. Moral distress arose when families and HPs were misaligned regarding treatment goals following the urGS diagnosis. We identified areas of practice that remain ethically challenging for HPs using urGS in the NICU/PICU. HPs experiences of using urGS in the NICU/PICU could inform specialized training in withdrawal of treatment decision making for the genomics workforce.https://www.mdpi.com/2227-9067/10/5/824bioethicsgenomic sequencingNICUPICUconsentgenetic counseling |
| spellingShingle | Katie Arkell Christopher Gyngell Zornitza Stark Danya F. Vears Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges Children bioethics genomic sequencing NICU PICU consent genetic counseling |
| title | Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges |
| title_full | Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges |
| title_fullStr | Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges |
| title_full_unstemmed | Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges |
| title_short | Rapid Genomic Testing in Intensive Care: Health Professionals’ Perspectives on Ethical Challenges |
| title_sort | rapid genomic testing in intensive care health professionals perspectives on ethical challenges |
| topic | bioethics genomic sequencing NICU PICU consent genetic counseling |
| url | https://www.mdpi.com/2227-9067/10/5/824 |
| work_keys_str_mv | AT katiearkell rapidgenomictestinginintensivecarehealthprofessionalsperspectivesonethicalchallenges AT christophergyngell rapidgenomictestinginintensivecarehealthprofessionalsperspectivesonethicalchallenges AT zornitzastark rapidgenomictestinginintensivecarehealthprofessionalsperspectivesonethicalchallenges AT danyafvears rapidgenomictestinginintensivecarehealthprofessionalsperspectivesonethicalchallenges |