How parents decide whether to have genomic newborn screening: experiences from BabyScreen

Area of Science:

• Genomics and Personalized Medicine
• Public Health and Health Policy
• Bioethics and Genetic Counseling

Background:

• Genomic newborn screening (gNBS) requires informed parental consent, necessitating research into decision-making processes.
• The BabyScreen+ pilot in Victoria, Australia, explored online consent for gNBS with genetic counseling support.
• Understanding parental perceptions is crucial for effective gNBS education and consent strategies.

Purpose of the Study:

• To investigate how prospective parents made decisions regarding participation in the BabyScreen+ genomic newborn screening pilot.
• To identify factors influencing parental decisions, including perceived susceptibility, benefits, barriers, and self-efficacy.
• To inform the development of equitable and effective gNBS education and consent processes.

Main Methods:

• A convergent parallel mixed methods design was employed with 1139 participants.
• Data collection included demographic surveys (n=1080), online surveys (n=1010), and interviews (n=24).
• Analysis involved descriptive statistics, logistic regression, and deductive content analysis mapped to the Health Belief Model.

Main Results:

• Most participants perceived low susceptibility to genetic conditions and difficulty conceptualizing severity.
• Key motivators for considering gNBS included potential health information, reassurance, and research contributions.
• Perceived barriers included inequitable information access, managing high-chance results, and data misuse concerns.

Conclusions:

• 87% of participants proceeded with gNBS, driven by perceived benefits outweighing barriers or manageable challenges via high self-efficacy.
• 13% did not proceed due to unclear benefits or low self-efficacy.
• The BabyScreen+ model demonstrated acceptability and feasibility, highlighting the need for tailored, equitable education to foster self-efficacy in gNBS decision-making.