Article Text
Abstract
Objects: With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening (NBS).
Design: Staff in 23 obstetric clinics/hospitals that conduct NBS in one city of southern Taiwan were interviewed. Using content analysis, 15 interview transcripts, eight completed questionnaires, and other relevant documents from the 23 clinics/hospitals were analysed to reveal the framework of the parental consent process in NBS in southern Taiwan.
Main measures: Three categories—informed consent, informed dissent, and no informed/consent—were developed to analyse the parental consent process in NBS.
Results: The parental consent procedures in NBS and the quality of the information provided before obtaining consent vary widely. Because the traditional NBS was incorporated into routine paediatric practices in most clinics/hospitals, the most frequently encountered consent model is “informed dissent” (60.9%) and “no informed/consent” (30.4%); while an “informed consent” model (45.5%) is the frequent model for screening rare metabolic/genetic disorders.
Conclusions: Specific guidelines to regulate the parental consent process for NBS are essential. Further studies should investigate parental responses to NBS, taking these as the basis on which to establish an informed consent model in Taiwan.
- CAH, congenital adrenal hyperplasia
- CFOH, Chinese Foundation of Health
- Tandem MS, mass spectrometry
- NBS, newborn screening
- NTU, National Taiwan University
- TIP, Taipei Institute of Pathology
- newborn screening
- informed consent
- informed dissent
- medical ethics
Statistics from Altmetric.com
Read the full text or download the PDF:
Other content recommended for you
- Evaluation of the Dutch neonatal screening for congenital adrenal hyperplasia
- Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening
- Information and consent for newborn screening: practices and attitudes of service providers
- Challenges of using whole genome sequencing in population newborn screening
- Cross-sectional prospective feasibility study of newborn screening for sickle cell anaemia and congenital hypothyroidism in Guyana
- Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol
- High 17-hydroxyprogesterone level in newborn screening test for congenital adrenal hyperplasia
- Primary congenital hypothyroidism: challenges in a low-income country without paediatric endocrinologist and universal newborn screening
- Incidence and clinical features of congenital adrenal hyperplasia in Great Britain
- Diagnostic potential of stored dried blood spots for inborn errors of metabolism: a metabolic autopsy of medium-chain acyl-CoA dehydrogenase deficiency