Consumer protections in genetic testing

FederalStatePrivate Sector

Genetic testing should not be performed on individuals unless they have provided informed consent. 

Licensed health professionals should play a role in advising consumers about the need for interpretation of all genetic testing, including direct-to-consumer testing. Health professionals who counsel or advise consumers about genetic testing, including direct-to-consumer testing, should be licensed. 

Consumers should be protected from discrimination based on their genetic profile or predispositions, gathered directly from personally identifiable data or through inferences from other data sources. For instance, consumers should not be subject to employment, insurance, or other discrimination based on inferences drawn on data or testing from a relative. 

Federal policymakers should prohibit employers and insurance companies from using data-driven inferences about an individual’s genetic information to make decisions affecting the individual. This could be accomplished by updating the Genetic Information Nondiscrimination Act or establishing another pathway. 

Organizations (including private companies and nonprofits) offering direct-to-consumer genetic tests should be required to: 

  • develop transparent and understandable privacy policies, 
  • provide consumers with meaningful choices about the extent to which their data can be used for genetic information research and disposition of their DNA samples, and 
  • only offer testing that is evidence-based, especially when claiming to reveal risk of disease. 

Policymakers should require companies to obtain express consent to collect, analyze, share, or report genetic data. Companies that want to transfer genetic data that could reveal a person’s identity to any third party should be required to obtain separate opt-in consent for this particular practice. 

Consumers should receive high-quality information and guidance about testing results. Companies should not offer tests for which there is insufficient evidence of the connection between results and disease risk. Federal policymakers should work with consumers and other stakeholders to develop and enforce standards for what types of testing are allowed, the evidence base for any claims about the results, and information that should be provided about follow-up and counseling.