Public Health Ethics 12 (2):158-175 (2019)

Abstract
Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1093/phe/phz003
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 69,226
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

Rethinking Informed Consent in Bioethics.Neil C. Manson - 2007 - Cambridge University Press.

View all 28 references / Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles

Issues of Consent and the Primary-School Medical.P. Bradley - 2000 - Journal of Medical Ethics 26 (6):469-472.
Parental Consent for Newborn Screening in Southern Taiwan.M.-C. Huang - 2005 - Journal of Medical Ethics 31 (11):621-624.
Informed Consent and the Bio-Banking of Material From Children.S.∅ren Holm - 2005 - Genomics, Society and Policy 1 (1):16-26.

Analytics

Added to PP index
2019-05-05

Total views
20 ( #555,340 of 2,499,677 )

Recent downloads (6 months)
1 ( #418,206 of 2,499,677 )

How can I increase my downloads?

Downloads

My notes