Consent for newborn screening: parents' and health-care professionals' experiences of consent in practice.
Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n=32); and (2) health-care professionals involved in the NBS process (n=19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.
Clinical Epidemiology Unit, Faculty of Medicine, Memorial University, St John's, Newfoundland and Labrador, Canada.
Holly
H
Etchegary
School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, Ontario, Canada.|Children's Hospital of Eastern Ontario (CHEO) Research Institute, Ottawa, Ontario, Canada.
Stuart G
SG
Nicholls
Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Laure
L
Tessier
Health Research Unit, Faculty of Medicine, Memorial University, St John's, Newfoundland and Labrador, Canada.
Charlene
C
Simmonds
School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, Ontario, Canada.
Beth K
BK
Potter
Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Jamie C
JC
Brehaut
Community Health and Humanities, Faculty of Medicine, Memorial University, St John's, Newfoundland and Labrador, Canada.
Daryl
D
Pullman
Institute of Health Policy Management and Evaluation, University of Toronto; Program in Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, ON, Canada.
Robyn
R
Hayeems
Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Sari
S
Zelenietz
Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Monica
M
Lamoureux
Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Jennifer
J
Milburn
Provincial Medical Genetics Program, Eastern Health, St John's, Newfoundland and Labrador, Canada.
Lesley
L
Turner
Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.|Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
Pranesh
P
Chakraborty
School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, Ontario, Canada.
Brenda
B
Wilson
D000328:Adult; D005260:Female; D005820:Genetic Testing / Q000941:ethics*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent / Q000941:ethics / Q000523:psychology*; D008297:Male; D015997:Neonatal Screening / Q000941:ethics / Q000523:psychology*; D010290:Parents / Q000523:psychology*