The Privacy Delusions Of Genetic Testing

  • Forbes | by: Peter J. Pitts |
  • 02/15/2017 12:00 AM
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Genetic testing promises a revolution in healthcare. With just a few swabs of saliva, diagnostics can provide an unprecedented look into a person's family history and potential health risks.

Within a decade, global sales of genetic tests are expected to hit $10 billion. Direct-to-consumer companies such as 23andMe and Genos have proven particularly popular, with tens of thousands of people purchasing at-home testing kits every year.

But the industry's rapid growth rests on a dangerous delusion: that genetic data is kept private. Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse.

Far from it. Genetic-testing companies cannot guarantee privacy. And many are actively selling user data to outside parties.

The problem starts with the Health Insurance Portability and Accountability Act (HIPAA), a 1996 federal law that allows medical companies to share and sell patient data if it has been "anonymized," or scrubbed of any obvious identifying characteristics.

 
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