California State Senator Umberg Proposes Stricter Rules for Direct Consumer Genetic Testing Businesses

by | Feb 12, 2020

In California a state senator in California is submitting proposed legislation which would allow for greater direct supervision in relation to direct genetic testing companies to the consumer.

Santa Ana Democratic Senator Thomas Umberg has formulated the proposed legislation using the California Consumer Privacy Act as a guideline for policing the ways in which companies can use the data collected from genetic testing.

He released a statement on the proposal which said: “The fact that the Pentagon just warned all military personnel in the country to avoid DNA at home the tests should raise bright red flags for all consumers. To date, direct consumer genetic testing companies have not been regulated by state or national governments. This has led to the disclosure of consumers’ private biological information to third parties. “

It mimics the CCPA in the manner that it regulates genetic testing companies by permitting consumers to request information on how their data is deployed and giving them the option to opt out of unauthorized applications of their data or the sale of that data to third parties. Umberg claims that the existing authorization forms are confusing and consumers have difficulty understanding what they have agreed to allow genetic testing companies to do with the data.

Umberg said the Pentagon released a memo advising service members not to use DTC genetic services because. The memo said: “The growing concern in the scientific community that the external parties are exploiting the use of genetic materials for questionable purposes, including mass surveillance and the ability to track people without their authorization or knowledge. ”

Senate Bill 980, Umberg’s proposal, states that DNA testing companies must adhere to stringent guidelines for authorization forms for genetic testing. The measure also established civil penalties for companies that do not comply with the stipulations of the Law.

Other states including Maryland and New York have had strict legislation in relation to how genetic tests can be marketed to consumers in books. Illinois has also passed new laws to toughen the way genetic tests can be used at the end of 2019.

Speaking about the proposal Senator Umberg said: “Forcing these companies to clarify their consent forms and requiring them to obtain written authorization for any disclosure of genetic data, including unidentified data, will reassure California consumers that their most personal information is secure”.

This move, along with the corresponding moves in other US states, highlights the move by legislators to punish though companies and individuals that are not doing the utmost to protects the private personal informations of consumers.

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Ryan Coyne is a results-driven leader in the healthcare compliance industry, specializing in regulatory compliance, compliance training, and assisting healthcare organizations and business associates in achieving and maintaining compliance. With a deep knowledge of healthcare regulations and a keen understanding of the challenges faced by the industry, Ryan has developed a reputation as a trusted advisor and advocate for ethical and compliant practices in healthcare. Ryan has successfully advised and guided numerous healthcare organizations, business associates, and healthcare professionals on achieving and maintaining compliance with regulatory training requirements. Ryan's professional focus is using his in-depth expertise and leading a world class team of subject matter experts at ComplianceJunction in regulatory compliance to help organisations navigate the complex landscape of ensuring staff adhere to healthcare regulations. You can connect with Ryan via LinkedIn and follow on Twitter

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