DNA kits may share personal data after death

DNA-testing company reportedly sharing data with FBI

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DNA-sampling kits that can trace an individual's ancestry became increasingly popular between 2017 and 2018, but now experts are concerned about DNA storage and use after a customer dies.

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Popular, privately owned DNA-sampling companies Ancestry DNA and 23andme have made layoffs in the past few months as the industry is hit with growing consumer privacy concerns and unknowns. 23andme said it was laying off 100 people, or 14 percent of its entire workforce, in what  CEO Anne Wojcicki called a "slow and painful" process as demand took a sudden turn.

"What consumers need to understand is that the majority of privacy policies for these kinds of genetic services hand over ownership of the genetic content to the service provider once the customer is deceased," Jo O'Reilly, deputy editor at expert privacy education and review site ProPrivacy, told FOX Business.

DNA-testing companies decide what to do with results once an ancestry test has taken place in accordance with their privacy policies, which have to be compliant with state and federal laws.


"Some privacy policies have been found to [have] conceded ownership of the contents of that genetic material to the testing company so that it can be used in future research projects or for the development of new medications and treatments," O'Reilly said. "What happens to that genetic material once a customer dies should also be covered by the privacy policy."

The topic made headlines this week after University of Washington School of Medicine professor Stephanie Fullerton spoke about concerns surrounding DNA test kits at the Association for the Advancement of Science in Seattle, saying that "in some cases, what happens with that information after we die is very unclear," according to The Daily Mail.

23andme headquarters in Silicon Valley.

O'Reilly explained how consumers can avoid this by reviewing privacy policies before they sign up for and take a DNA test.

"Consumers must ensure that they check their rights before paying to use these kinds of DNA testing services," she said. "Some services allow their customers to designate a beneficiary once the die. A designated beneficiary takes control of control of the genetic data to ensure that they have the final say on whether genetic samples can be used for additional tests once the tested individual has passed away."


"Consumers who fail to designate a beneficiary basically end up giving the company ownership of their genetic data and this can result in very serious privacy risks for the descendants of that individual," O'Reilly added.

Both Ancestry and 23andme require signed customer consent forms to use DNA samples for research with or without third-party companies after they are submitted for ancestry testing, according to their respective privacy statements. 23andme gives customers the option to require the company to discard DNA samples after ancestry results are submitted at their request.

Both companies do not voluntarily comply with law enforcement but will hand over information if they are presented with warrants and other necessary legal measures conducted by law enforcement to get access to confidential information, the statements say.

The phenomenon of an individual's sensitive personal information living on after death, however, is a relatively new talking point within the tech and social media industries due to the increasing amount of information people share online. Experts are saying this phenomenon extends to the DNA-sampling industry, as well, especially since DNA information can be used for medical research


"Genetic data can be used to pinpoint the markers for hereditary diseases, which means that any findings resulting from testing an individual's genome could result in their descendant's health data being known by those services and any third parties they disseminate that data to," O'Reilly said.

"Once a consumer dies and ownership of their genetic data passes to the genetic testing company, it is possible for the information gathered from that genetic material to go on affecting their descendants long into the future. One potential repercussion of this is that those descendants could potentially face higher life insurance bills to cover the fact that they are known to be at risk of predisposition to hereditary diseases," she explained.


Ancestry saw a 54 percent drop in 2019 holiday sales compared to 2018 holiday sales; 23andme similarly saw a 38 percent drop over the same time period, Vox reported Feb. 13, citing new data from Second Measure.

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