Published March 21, 2025
| Version 1
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Sharing behavior and health care utilization following direct-to-consumer genetic testing: a systematic review
Authors/Creators
- 1. Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, 3000, Belgium
- 2. Department of Health, Ethics & Society, Maastricht University GROW School for Oncology and Reproduction, Maastricht, Limburg, The Netherlands
Description
Direct-to-consumer genetic testing (DTC-GT) is now widely available, allowing people to learn about their genetic health risks without the involvement of a health care professional. Many companies offering these tests recommend that consumers talk to healthcare professionals to help understand their results, which could affect the healthcare system. We reviewed studies to learn about three things: (1) how frequently people share their genetic test results after using a DTC-GT, (2) healthcare professionals' experiences with consumers sharing their DTC-GT results, and (3) how people use healthcare services after taking a DTC-GT, particularly in confirming results and making health decisions based on them. We found 40 relevant studies published between 2009 and 2022. The number of people who shared their genetic test results with a healthcare professional varied, ranging from 1% to 57%. Most often, people shared their results with their primary healthcare provider. Healthcare professionals had experience with consumers sharing their genetic test results in 19% to 76% of cases. Many consumers also shared their results with family members, with a range of 18% to 98% sharing their results, mostly with close family like partners, parents, and siblings. Fewer people shared their results with extended family. Some studies also mentioned that healthcare professionals sometimes confirmed the test results and took action based on them. Even though initial worries about the impact of DTC-GT on healthcare systems has not fully happened yet, our results show that an increasing number of people that use DTC-GT are consulting healthcare professionals. This shows a growing need for healthcare systems to have appropriate policies in place. Future research should focus on creating consistent study methods and look at how DTC-GT is affecting healthcare worldwide, beyond just the U.S.
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