Germline whole genome sequencing in pediatric oncology in Denmark—Practitioner perspectives
(2020) In Molecular Genetics and Genomic Medicine 8(8).- Abstract
Background: With the implementation of a research project providing whole genome sequencing (WGS) to all pediatric cancer patients in Denmark (2016–2019), we sought to investigate healthcare professionals' views on WGS as it was actively being implemented in pediatric oncology. Methods: Semistructured interviews were carried out with pediatric oncologists, clinical geneticists, and research coordinating nurses (N = 17), followed by content analysis of transcribed interviews. Interviews were supplemented by ethnographic observations on Danish pediatric oncology wards. Additionally, questionnaires were distributed to healthcare professionals concerning when they found it appropriate to approach families regarding WGS. The response rate... (More)
Background: With the implementation of a research project providing whole genome sequencing (WGS) to all pediatric cancer patients in Denmark (2016–2019), we sought to investigate healthcare professionals' views on WGS as it was actively being implemented in pediatric oncology. Methods: Semistructured interviews were carried out with pediatric oncologists, clinical geneticists, and research coordinating nurses (N = 17), followed by content analysis of transcribed interviews. Interviews were supplemented by ethnographic observations on Danish pediatric oncology wards. Additionally, questionnaires were distributed to healthcare professionals concerning when they found it appropriate to approach families regarding WGS. The response rate was 74%. Results: Healthcare professionals see imbalances in doctor–patient relationship, especially the double role doctors have as clinicians and researchers. Some were concerned that it might not be possible to obtain meaningful informed consent from all families following diagnosis. Still, 94% of respondents found it acceptable to approach families during the first 4 weeks from the child's diagnosis. Views on the utility of WGS, treatment adaptation, and surveillance differed among interviewees. Conclusion: Overall, healthcare professionals see dilemmas arising from WGS in the pediatric oncology clinic, and some advocate for further educational sessions with families and healthcare professionals. Despite concerns, healthcare professionals overwhelmingly supported early approach of families regarding WGS. Interviewees disagree on the benefits of surveillance based on genetic findings.
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- author
- Byrjalsen, Anna ; Stoltze, Ulrik K. ; Castor, Anders LU and Wahlberg, Ayo
- publishing date
- 2020
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- clinical genetics, ethics, pediatric oncology, practitioner perspectives, whole genome sequencing
- in
- Molecular Genetics and Genomic Medicine
- volume
- 8
- issue
- 8
- publisher
- John Wiley & Sons Inc.
- external identifiers
-
- scopus:85085941536
- pmid:32500610
- ISSN
- 2324-9269
- DOI
- 10.1002/mgg3.1276
- language
- English
- LU publication?
- no
- id
- fe5eac99-bf98-4cd1-815b-ce1679b4b49d
- date added to LUP
- 2020-06-30 15:29:15
- date last changed
- 2024-05-01 13:00:54
@article{fe5eac99-bf98-4cd1-815b-ce1679b4b49d,
abstract = {{<p>Background: With the implementation of a research project providing whole genome sequencing (WGS) to all pediatric cancer patients in Denmark (2016–2019), we sought to investigate healthcare professionals' views on WGS as it was actively being implemented in pediatric oncology. Methods: Semistructured interviews were carried out with pediatric oncologists, clinical geneticists, and research coordinating nurses (N = 17), followed by content analysis of transcribed interviews. Interviews were supplemented by ethnographic observations on Danish pediatric oncology wards. Additionally, questionnaires were distributed to healthcare professionals concerning when they found it appropriate to approach families regarding WGS. The response rate was 74%. Results: Healthcare professionals see imbalances in doctor–patient relationship, especially the double role doctors have as clinicians and researchers. Some were concerned that it might not be possible to obtain meaningful informed consent from all families following diagnosis. Still, 94% of respondents found it acceptable to approach families during the first 4 weeks from the child's diagnosis. Views on the utility of WGS, treatment adaptation, and surveillance differed among interviewees. Conclusion: Overall, healthcare professionals see dilemmas arising from WGS in the pediatric oncology clinic, and some advocate for further educational sessions with families and healthcare professionals. Despite concerns, healthcare professionals overwhelmingly supported early approach of families regarding WGS. Interviewees disagree on the benefits of surveillance based on genetic findings.</p>}},
author = {{Byrjalsen, Anna and Stoltze, Ulrik K. and Castor, Anders and Wahlberg, Ayo}},
issn = {{2324-9269}},
keywords = {{clinical genetics; ethics; pediatric oncology; practitioner perspectives; whole genome sequencing}},
language = {{eng}},
number = {{8}},
publisher = {{John Wiley & Sons Inc.}},
series = {{Molecular Genetics and Genomic Medicine}},
title = {{Germline whole genome sequencing in pediatric oncology in Denmark—Practitioner perspectives}},
url = {{http://dx.doi.org/10.1002/mgg3.1276}},
doi = {{10.1002/mgg3.1276}},
volume = {{8}},
year = {{2020}},
}