Exploration of clinical and ethical issues in an expanded newborn metabolic screening programme: a qualitative interview study of healthcare professionals in Hong Kong

The Newborn Screening Programme for Inborn Errors of Metabolism (NBSIEM) enables early intervention and prevents premature mortality. Residual dried bloodspots (rDBS) from the heel prick test are a valuable resource for research. However, there is minimal data regarding how stakeholders in Hong Kong...

Full description

Saved in:
Bibliographic Details
Published in:Hong Kong medical journal = Xianggang yi xue za zhi 2024-04, Vol.30 (2), p.120-129
Main Authors: Ngan, O M Y, Tam, C J, Li, C K
Format: Article
Language:English
Subjects:
Adult
Attitude of Health Personnel
Consent
Data analysis
Disease
Female
Gynecology
Health Personnel - psychology
Hong Kong
Hospitals
Humans
Infant, Newborn
Interviews
Interviews as Topic
Laboratories
Male
Medical personnel
Medical screening
Metabolism
Metabolism, Inborn Errors - diagnosis
Metabolites
Mortality
Neonatal Screening - ethics
Obstetrics
Pediatrics
Professional ethics
Public health
Qualitative Research
Quality control
Retention
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:The Newborn Screening Programme for Inborn Errors of Metabolism (NBSIEM) enables early intervention and prevents premature mortality. Residual dried bloodspots (rDBS) from the heel prick test are a valuable resource for research. However, there is minimal data regarding how stakeholders in Hong Kong view the retention and secondary use of rDBS. This study aimed to explore views of the NBSIEM and the factors associated with retention and secondary use of rDBS among healthcare professionals in Hong Kong. Between August 2021 and January 2022, semi-structured interviews were conducted with 30 healthcare professionals in obstetrics, paediatrics, and chemical pathology. Key themes were identified through thematic analysis, including views towards the current NBSIEM and the retention and secondary use of rDBS. After implementation of the NBSIEM, participants observed fewer patients with acute decompensation due to undiagnosed inborn errors of metabolism. The most frequently cited clinical utilities were early detection and improved health outcomes. Barriers to rDBS storage and its secondary use included uncertain value and benefits, trust concerns, and consent issues. This study highlighted healthcare professionals' concerns about the NBSIEM and uncertainties regarding the handling or utilisation of rDBS. Policymakers should consider these concerns when establishing new guidelines.
ISSN:1024-2708
2226-8707
DOI:10.12809/hkmj2210234