Evaluating Web-Based Direct-to-Consumer Genetic Tests for Cancer Susceptibility
Madison K Kilbride1, Angela R Bradbury1,2
1Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
Direct-to-consumer (DTC) genetic testing for cancer susceptibility has evolved, with new models and broader scope. Consumers need more information to understand DTC genetic tests and their results for informed decision-making.
Area of Science:
- Genetics
- Consumer Health
- Medical Diagnostics
Background:
- Direct-to-consumer (DTC) genetic testing for cancer susceptibility has undergone significant changes.
- A dominant market model now involves physician ordering of tests advertised directly to consumers.
- Current DTC tests offer a wider scope and greater potential clinical significance than earlier versions.
Purpose of the Study:
- To provide a comprehensive overview of available DTC genetic tests for cancer susceptibility.
- To identify factors within the DTC testing process that influence consumers' informed decision-making and result interpretation.
Main Methods:
- Reviewed DTC genetic tests for cancer susceptibility, detailing cost, ordering process, variant reporting, genetic counseling, and clinical validity.
- Examined six key aspects of the DTC testing process impacting consumer understanding: terminology, data usage, counseling extent, result delivery, physician roles, and reclassification communication.
Main Results:
- Consumers would benefit from increased transparency regarding specific aspects of DTC genetic testing.
- Current information provided by companies is insufficient for consumers to make fully informed decisions.
Conclusions:
- Enhanced information provision is crucial for consumers to make informed choices about DTC genetic testing services.
- Understanding the implications and limitations of DTC genetic test results is vital for consumers who pursue testing.
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