A survey of parental consent process for newborn screening in Taiwan

Mei Chih Huang, Chia Kuei Lee, Shio Jean Lin, I. Chen Lu

Research output: Contribution to journalReview article

1 Citation (Scopus)

Abstract

Recent technological developments in newborn screening (NBS) allow many genetic/metabolic disorders to be detected pre-symptomatically even though they may be untreatable. Thus, current NBS faces ethical, legal, and social challenges. Obtaining parental consent for NBS demonstrates respect for and educates parents. The purpose of this study was to explore current practices in obtaining parental consent to conduct NBS in Taiwan. A self-administered questionnaire was mailed to obstetric clinics/hospitals (N=339) and 204 questionnaires were returned for a response rate of 60.2%. Parental consent processes for NBS were divided into three categories-informed consent, informed refusal, and no informed/consent. Between 66.7-67.6% clinics/hospitals used an "informed consent" model for all NBS items. Although most clinics/hospitals frequently informed parents before screening was conducted, the information given was often incomplete. Moreover, a "no informed/consent" model was used for congenital adrenal hyperplasia (CAH) and rare genetic/metabolic disorders in between 22.5% and 25.1% of the clinics/hospitals, respectively. A total of 23.1% of clinics/hospitals chose an "informed refusal" model for the five traditional genetic/metabolic disorders. Using logistic regression analysis, the parental consent process for the five traditional disorders was found to have significant associations with the classification of the hospitals and the contracted NBS center (p < 0.01). Regional hospitals less frequently used the "informed consent" model than local clinics, and the clinics/hospitals that contracted with National Taiwan University Hospital were more likely to follow an "informed consent" model rather than those contracted with Taipei Institute Pathology. Establishing specific guidelines to regulate the parental consent process and educate medical personnel is crucial.

Original languageEnglish
Pages (from-to)361-369+407
JournalActa Paediatrica Taiwanica
Volume46
Issue number6
Publication statusPublished - 2005 Nov 1

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Parental Consent
Taiwan
Informed Consent
Newborn Infant
Inborn Genetic Diseases
Parents
Congenital Adrenal Hyperplasia
Surveys and Questionnaires
Obstetrics
Logistic Models
Regression Analysis
Guidelines
Pathology

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health

Cite this

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title = "A survey of parental consent process for newborn screening in Taiwan",
abstract = "Recent technological developments in newborn screening (NBS) allow many genetic/metabolic disorders to be detected pre-symptomatically even though they may be untreatable. Thus, current NBS faces ethical, legal, and social challenges. Obtaining parental consent for NBS demonstrates respect for and educates parents. The purpose of this study was to explore current practices in obtaining parental consent to conduct NBS in Taiwan. A self-administered questionnaire was mailed to obstetric clinics/hospitals (N=339) and 204 questionnaires were returned for a response rate of 60.2{\%}. Parental consent processes for NBS were divided into three categories-informed consent, informed refusal, and no informed/consent. Between 66.7-67.6{\%} clinics/hospitals used an {"}informed consent{"} model for all NBS items. Although most clinics/hospitals frequently informed parents before screening was conducted, the information given was often incomplete. Moreover, a {"}no informed/consent{"} model was used for congenital adrenal hyperplasia (CAH) and rare genetic/metabolic disorders in between 22.5{\%} and 25.1{\%} of the clinics/hospitals, respectively. A total of 23.1{\%} of clinics/hospitals chose an {"}informed refusal{"} model for the five traditional genetic/metabolic disorders. Using logistic regression analysis, the parental consent process for the five traditional disorders was found to have significant associations with the classification of the hospitals and the contracted NBS center (p < 0.01). Regional hospitals less frequently used the {"}informed consent{"} model than local clinics, and the clinics/hospitals that contracted with National Taiwan University Hospital were more likely to follow an {"}informed consent{"} model rather than those contracted with Taipei Institute Pathology. Establishing specific guidelines to regulate the parental consent process and educate medical personnel is crucial.",
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A survey of parental consent process for newborn screening in Taiwan. / Huang, Mei Chih; Lee, Chia Kuei; Lin, Shio Jean; Lu, I. Chen.

In: Acta Paediatrica Taiwanica, Vol. 46, No. 6, 01.11.2005, p. 361-369+407.

Research output: Contribution to journalReview article

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N2 - Recent technological developments in newborn screening (NBS) allow many genetic/metabolic disorders to be detected pre-symptomatically even though they may be untreatable. Thus, current NBS faces ethical, legal, and social challenges. Obtaining parental consent for NBS demonstrates respect for and educates parents. The purpose of this study was to explore current practices in obtaining parental consent to conduct NBS in Taiwan. A self-administered questionnaire was mailed to obstetric clinics/hospitals (N=339) and 204 questionnaires were returned for a response rate of 60.2%. Parental consent processes for NBS were divided into three categories-informed consent, informed refusal, and no informed/consent. Between 66.7-67.6% clinics/hospitals used an "informed consent" model for all NBS items. Although most clinics/hospitals frequently informed parents before screening was conducted, the information given was often incomplete. Moreover, a "no informed/consent" model was used for congenital adrenal hyperplasia (CAH) and rare genetic/metabolic disorders in between 22.5% and 25.1% of the clinics/hospitals, respectively. A total of 23.1% of clinics/hospitals chose an "informed refusal" model for the five traditional genetic/metabolic disorders. Using logistic regression analysis, the parental consent process for the five traditional disorders was found to have significant associations with the classification of the hospitals and the contracted NBS center (p < 0.01). Regional hospitals less frequently used the "informed consent" model than local clinics, and the clinics/hospitals that contracted with National Taiwan University Hospital were more likely to follow an "informed consent" model rather than those contracted with Taipei Institute Pathology. Establishing specific guidelines to regulate the parental consent process and educate medical personnel is crucial.

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