DTC genetic testing: pendulum swings and policy paradoxes
1Health Law and Science Policy Group, University of Alberta, Edmonton, AB T6G 2H5, Canada. tcaulfld@law.ualberta.ca
Clinical Genetics
|October 18, 2011
Summary
Public perception of genomic research has shifted due to the limited predictive power of genetic risk information. This necessitates accurate information from direct-to-consumer (DTC) genetic testing companies.
Area of Science:
- Genomic research and public health communication.
Background:
- Popular press portrayals of genomic research have shifted from optimistic to skeptical.
- This change is largely due to the limited predictive accuracy of most genetic risk information.
Purpose of the Study:
- To explore the policy paradox surrounding the regulation of direct-to-consumer (DTC) genetic testing.
- To justify the need for regulation despite the limited predictive power and potential for minimal harm from genetic information.
Main Methods:
- Analysis of the shift in public perception and scientific discourse regarding genomic research.
- Examination of the Canadian College of Medical Geneticists (CCMG) Policy Statement on DTC Genetics Testing.
Main Results:
- Most genetic risk information is not highly predictive of future health outcomes.
- A key justification for regulating DTC genetic testing is to ensure the accuracy of information provided to the public.
Conclusions:
- Despite the limited predictive power of genetic information, regulation of DTC genetic testing is warranted.
- Ensuring accurate marketing and test results from DTC genetic testing companies is a minimum requirement.
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