Obtaining Consent for Newborn Bloodspot Screening (NBS): Parents’ and Healthcare Professionals’ Experiences in Practice

Holly Etchegary1, Stuart G. Nicholls2, Laure Tessier2, Charlene Simmonds3, Beth K. Potter2, Jamie C. Brehaut2,4, Daryl Pullman5, Robin Z. Hayeems6,7, Sari Zelenietz8, Monica Lamoureux8, Jennifer Milburn8, Lesley Turner9, Pranesh Chakraborty8, Brenda J. Wilson2

1. School of Epidemiology, Public Health & Preventive Medicine, University of Ottawa, Ottawa, Ontario, Canada; 2. Clinical Epidemiology, Memorial University, St. John’s, Newfoundland and Labrador, Canada; 3. Health Research Unit, Division of Community Health and Humanities, Faculty of Medicine, Memorial University, St. John’s, Newfoundland and Labrador, Canada; 4. Clinical Epidemiology Program, Centre for Practice Changing Research, Ottawa Hospital Research Institute, Ottawa, Canada; 5. Division of Community Health and Humanities, Faculty of Medicine, Memorial University, St. Johns, Newfoundland and Labrador, Canada; 6. Program in Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, Ontario, Canada; 7. Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; 8. Newborn Screening Ontario, Children’s Hospital of Eastern Ontario (CHEO), Ottawa, Ontario, Canada; 9. Eastern Health, St. John’s, Newfoundland and Labrador, Canada

Background: Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of a newborn for a number of serious and life-threatening conditions. In Canada, the practice of NBS falls under provincial jurisdiction with no national coordination. We know little about the actual process of obtaining informed consent for NBS and how these experiences might differ across provinces or between key stakeholders such as parents and healthcare professionals (HCP). This study will extend an emerging literature on the opinions and experiences of parents and HCPs regarding consent practices to newborn screening in Canada.

Methods and Analysis: Semi-structured interviews were held with parents (n=28) and HCPs (n=19) in Ontario and Newfoundland and Labrador; two provinces that differ in both screening content and structure. Parents were identified through records held by each provincial screening program, while healthcare professionals were purposively sampled based on role within newborn screening programs. Qualitative description was used to examine transcripts in order to identify common themes.

Results: The process for obtaining consent for NBS, as described by parents and HCPs, was variable within both provinces, ranging from detailed prenatal discussions to the near absence of information. Most parents were only vaguely aware of NBS prior to giving birth and had not given it much thought. However, NBS was largely perceived as a positive and a routine element of post partum care. While most mothers disagreed with the idea of mandated screening (i.e. no option to decline), some did support this approach. HCP experiences and attitudes were marked with assumptions about the roles of other HCPs. There was variability in the described processes of obtaining informed consent, with some HCPs taking a longer and more thorough approach, while others approached the process as a routine event with little explanation offered to parents. All HCPs supported the idea of parents being informed, but noted practical limitations in the process (e.g., timing of providing information and obtaining consent).

Conclusions: Findings highlight variability in the process of obtaining informed consent for NBS and also further our understanding of attitudes toward consent and how these affect the process in practice. Findings may also have specific application to the development of parent education materials for NBS or help identify areas of professional development for HCPs in relation to consent practices.