Viewpoint: Consumer genetic tests and scant privacy protections give us reason to be ‘terrified’

| | December 4, 2019
dna tests kits
Image: Genetics Digest
This article or excerpt is included in the GLP’s daily curated selection of ideologically diverse news, opinion and analysis of biotechnology innovation.

[Y]ou don’t have to be Orwell to understand that the decision to allow a profit-driven company to analyze a person’s data at a genetic level represents a new level of privacy threat. It makes the traditional categories of personal data seem tame by comparison.

I emerged from my deep-dive into the topic skeptical about the effectiveness of current regulation to protect consumers’ genetic information from being exploited in ways they can’t foresee. Most importantly, the data yielded by these kits are not considered or classified as actual medical health data, which is protected by the strict regulations of HIPAA. The only legislation directly concerning this data is called the Genetic Information Non-discrimination Act (also known as GINA), and it has been criticized by privacy experts for its narrow scope.

Related article:  In the age of DNA, sperm donors can no longer expect promises of anonymity to stand up

[I]t’s just not possible to predict how responsibly these DNA companies will behave in the future. It’s also impossible to predict how robust the security infrastructure of these companies will prove. And it’s impossible to know if they’ll be acquired by someone like an Amazon with intent to match purchase behaviors to the expressions of certain genes. Terrified yet?

Read full, original post: DNA test kits threaten kids’ privacy in ways we can’t understand yet

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