French data watchdog advises people to delete any DNA test information online

People who have used DNA testing services to explore their ancestry are being urged to delete any data online, following the bankruptcy of a major US DNA testing company. 

France’s online data watchdog (Commission nationale de l'Informatique et des libertés, CNIL) made the warning following California-based 23andMe declaring bankruptcy last weekend.

Several US Attorney Generals have also recommended this. 

The expected sale of the company has led to serious concerns about what will be done with the stored data of millions of customers.

“It is worrying when you read the general terms and conditions of sale [of such companies], they can do absolutely what they want," said Hélène Guimiot, head of the health department at the CNIL, to French media outlet FranceInfo. 

“People assume that they are going to receive information about themselves and their origins, and that this is the heart of the service.”

“But in practice, the aim of these companies is to gather genetic data in order to do a whole range of things,” she added. 

There is always the risk of the data ending up with pharmaceutical companies, insurance companies etc.

The company states that as part of a bankruptcy proceeding, personal data may be sold to the highest bidder.

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The CNIL previously warned people in France against using services such as 23andMe for ‘recreational’ purposes.

Previously, hackers stole the data of some six million 23andMe customers.

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How can data be deleted? 

23andMe’s website states “If, at any time, you are no longer interested in participating in our Services, you may delete your 23andMe account directly within your Account Settings."

This will prevent the information being passed on to the company’s eventual buyer. 

However, it will not prevent cases where the data has been previously sold on. 

It is possible to download a personal copy of your data before deleting the information from your 23andMe account. 

There were reports earlier in the week that customers trying to download their personal data were facing issues, however this seems to have been fixed. 

23andMe customers can also delete their test sample from the ‘preferences’ section of the website, and withdraw consent for genetic data to be passed on. 

Anyone concerned should do this as quickly as possible, before the company is sold.

Those who have given data to similar companies may also wish to delete their information in advance, to address such risk.

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