Consumer Experiences and Perceptions of Genetic Counseling in Provider-Mediated Genetic Testing

Area of Science:

• Genetics and Genomics
• Consumer Health
• Healthcare Delivery Models

Background:

• Provider-mediated genetic testing (PM-GT) combines online consumer initiation with physician oversight for genetic tests.
• Genetic counseling is crucial for interpreting results and guiding medical decisions but is often limited in PM-GT.
• Understanding consumer engagement with genetic counseling in PM-GT is essential for optimizing healthcare.

Purpose of the Study:

• To explore consumer engagement with genetic counseling within the PM-GT model.
• To identify factors influencing the pursuit and perceived value of genetic counseling among PM-GT users.
• To assess the gap between interest in and uptake of genetic counseling services.

Main Methods:

• Qualitative interviews with 29 participants who underwent a 59-gene panel test via a PM-GT company.
• Follow-up survey focused on genetic counseling experiences and perceptions.
• Quantitative and qualitative content analysis of interview and survey data.

Main Results:

• Most participants did not engage in pre- or post-test genetic counseling.
• Nearly half of participants who had not yet received counseling expressed future interest.
• Time constraints were the primary barrier to accessing genetic counseling services.

Conclusions:

• A significant gap exists between consumer interest in genetic counseling and actual service utilization in PM-GT.
• Consumers found offered counseling helpful for understanding results, disease risk, and medical decision-making.
• Proactive integration of genetic counseling into PM-GT processes is needed to support consumers effectively.