2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-User Experience on Direct-to-Consumer Genetics Testing from A Three-Generation Family and Insights into Future Genetics Testing

Pdf Summary

Direct-to-Consumer (DTC) genetics testing, available for almost two decades, has faced criticism for providing misleading results and inadequate disclosure of test limitations. Despite this, DTC testing companies continue to gain popularity among adolescents and young adults. This study investigated the utility of a DTC genetics test on the health management of a three-generation family and gathered insights from generation Y and Z users regarding future genetics testing. <br /><br />The study participants included two teens, one adult, and one senior, who ordered the 23andMe+Membership DTC test through the vendor's website. The test results, including genotype-based risk prediction for health conditions, were provided through phone apps and a web-based user account. The research questions asked in the study explored motivations for conducting DTC testing, levels of understanding of the test, the usefulness of DTC results, behavioral changes, privacy concerns, and implications for future genetics testing.<br /><br />Key lessons learned from the study include:<br /><br />1) The education/occupation background of participants influenced their expectations and level of excitement about the test results.<br />2) Teen-users had no prior exposure to genetic testing and believed in the clinical utilities of the test without questioning its validity or privacy concerns.<br />3) The adult user, with knowledge in clinical laboratory genetics, had questions about all aspects of the DTC testing and had privacy concerns.<br />4) The risk prediction profiles from the DTC test did not match the individual's current health conditions or known family health histories, reducing the preventive utility of the testing.<br />5) The DTC test results did not lead to any behavioral changes or dietary modifications.<br />6) Sample integrity was the responsibility of the consumer/user.<br />7) DTC testing was found to be affordable, accessible, and user-friendly, but lacked the involvement of doctors from ordering to result interpretations.<br /><br />The study concluded that although DTC testing provides convenient and interactive access to genetic information, there are limitations in terms of predictive accuracy and personalized health management. The results of the DTC testing did not significantly impact the behaviors or health management of the participants.

Asset Subtitle

Presenting Author - Olivia Wu, NA; Co-Author - Richard L. Ji, HS; Co-Author - Yuan Ji, PhD, MBA, FACMG;

Meta Tag

Education

Genetic Testing

Genotype-Phenotype Correlations

Population Genetics

Public Patient and Professional Education

Risk Assessment

Co-Author Richard L. Ji, HS

Co-Author Yuan Ji, PhD, MBA, FACMG

Presenting Author Olivia Wu, NA

Keywords

Direct-to-Consumer genetics testing

DTC testing

misleading results

test limitations

popularity among adolescents

popularity among young adults

health management

three-generation family

generation Y users

generation Z users