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Consumer Reports supports SB 980 to secure data privacy for at-home healthcare testing

Consumer Reports writes in support of SB 980, which would strengthen privacy protections to uniquely sensitive personal information collected by direct-to-consumer (DTC) genetic testing companies. This bill will ensure that genetic information remains confidential by providing detailed requirements to allow for authorization to disclose the information to specific recipients, and appropriately limits the ways in which companies can use this information.

With the increasing development of at-home healthcare solutions, testing, and products, it is important to ensure that our laws protect consumers in the rapidly changing market. Currently, no federal law directly addresses consumer privacy issues resulting from DTC genetic testing. While the California Consumer Privacy Act gives consumers the right to opt out of the sale of this information, this protection kicks in only after the consumer takes action. As a result, by default, DTC genetic testing companies can do whatever they want with consumers’ most personal information.

Inappropriate use of this highly sensitive data can deeply affect consumers. For example, access to life, disability, and long-term care insurance can be impacted by the results of genetic testing. Genetic information gathered by DTC genetic companies can be shared with or sold to third parties, with no disclosure to the consumer. Further, in a survey of DTC genetic testing companies, 71% percent of companies could use consumer information internally for purposes other than providing the results to consumers. By curbing unauthorized disclosure and curbing secondary uses of this sensitive data, this bill would extend important privacy protections to consumers.