Sharing behavior and health care utilization following direct-to-consumer genetic testing: a systematic review

Area of Science:

• Genetics and Genomics
• Healthcare Systems Research
• Consumer Health

Background:

• Direct-to-consumer genetic testing (DTC-GT) is increasingly accessible and affordable.
• DTC-GT companies often advise consumers to consult healthcare professionals for result interpretation.
• This trend may impact healthcare system utilization and resource allocation.

Purpose of the Study:

• To systematically review DTC-GT consumer sharing behaviors.
• To understand healthcare professionals' experiences with DTC-GT consumers.
• To assess healthcare utilization, including result validation and clinical actions, post-DTC-GT.

Main Methods:

• Conducted a systematic review of 40 articles published between 2009 and 2022.
• Focused on consumer sharing patterns, healthcare professional interactions, and healthcare utilization.
• Registered the systematic review with PROSPERO (CRD42024517079).

Main Results:

• Sharing DTC-GT results with healthcare professionals ranged from 1% to 57%, most commonly with primary care providers.
• 19% to 76% of healthcare professionals reported experiences with DTC-GT consumers sharing results.
• Sharing with family members (partners, parents, siblings) was high (18%-98%), with less frequent sharing with extended family; instances of result validation and clinical actions were noted.

Conclusions:

• Initial concerns regarding DTC-GT's impact on healthcare systems have not fully materialized.
• The growing trend of consumers consulting healthcare professionals necessitates preparedness and policy development.
• Future research should standardize methodologies and broaden geographic scope beyond the U.S.