Washington, DC – Consumer Reports has released a new study investigating the regulatory environment of the direct-to-consumer genetic testing industry. The study, Direct-to-Consumer Genetic Testing: The Law Must Protect Consumers’ Genetic Privacy, provides an overview of existing federal and state regulations and identifies legal gaps that leave the privacy and security of sensitive health data at risk.
“Direct-to-consumer” (DTC) genetic testing is a booming industry with insufficient safeguards for consumers. On Amazon Prime Day last year, millions of Amazon shoppers purchased discounted DTC testing kits for sale, likely without fully understanding what they were signing up for—including that there is little to restrict what DTC genetic testing companies can do with their data. Unauthorized disclosure of this information could be harmful for consumers, especially as there is no federal prohibition on the use of genetic data in life, disability, and long-term care insurance underwriting. While genetic testing has been around for some time, the DTC model presents new legal and ethical challenges.
“This DTC genetic testing market is growing quickly and policymakers need to catch up to keep consumer data safe. Currently, there are few legal requirements for the collection of DNA, and given the increased popularity of these platforms, we need better regulations to hold these companies accountable,” said Justin Brookman, the author of the report and the director for privacy and technology policy at Consumer Reports. “Federal and state policymakers should require DTC genetic testing companies to get the consumer’s permission before any data sharing or secondary use, to keep the data secure from unauthorized access, prohibit the use of this data in insurance underwriting, and ensure that consumers can’t be charged for exercising their privacy rights.”
Currently, no federal law directly addresses consumer privacy issues resulting from DTC genetic testing and state-based privacy protections are only present in a few states. However, the California legislature is considering a CR-supported DTC genetic testing bill that could provide millions of consumers with new protections to safeguard their genetic data.
Consumer Reports is calling on consumers to sign a petition demanding that federal and state policymakers guarantee these protections for genetic data.
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