23andMe controversy sparks skepticism from users

Genetic testing company sells customer information to third parties

Article Revised

23andMe, a popular DNA research company, has recently sparked much controversy after selling customer information to third parties, including insurance companies and pharmacies who, in turn, raised the costs of certain medications and treatments the customer will likely receive in the future.

In order to receive genetic test results, users must first submit their DNA in the form of saliva in a tube. 23andMe then uses machine learning to develop its algorithm. The use of a machine means that as time goes on, users’ results will become more and more accurate.

23andMe can be used to learn about origins, family health history and to locate relatives users were before unaware of.

“I was trying to see if I had any traces of DNA from a place I was not aware of. I found out I was 100 percent European and predominantly Ashkenazi Jewish and Irish,” sophomore Daniel Conway said.

Prior to this current issue, the company has faced no backlash since it began in 2006.

“I was happy with the program. The results came in quickly and that was all I could ask for,” Conway said. “Selling [DNA] to insurance companies might be a bit morally wrong. With the information, medical companies could experiment with the data.”

This controversy can also be found in other ancestry companies, including AncestryDNA.

Senior Kimia Ranjbar used AncestryDNA.

“I decided to take a DNA test because I was always curious about who I am,” Ranjbar said.

Ranjbar hoped to learn about her family’s heritage.

“I knew for a fact that I was Iranian from both sides … The test showed I was 91 percent Iranian, so not a surprise at all,” Ranjbar said.

Ranjbar, however, did not know about the company’s involvement with third parties.

“I had no idea about that. I still think it’s worth it to take the DNA test,” Ranjbar said.

However, beyond the negativity, this company continues to help people find family members.

“I was adopted from China at 11 months old and I don’t know anything about my birth parents,” senior Claire Epstein said.

She later found out about 23andMe.

“I was interested in finding my birth parents and I knew it wasn’t a feasible option to use American DNA test, but as I did more research I found more information about 23andMe,” Epstein said. “23andMe is great for Asian people, so I chose to do that test.”

Through the DNA test, she made a connection to a long lost family member.

“It gives you a list of people who share your DNA similarities. Someone messages me two days later and on the website it says she is probably my third to fourth cousin,” Epstein said.

Epstein found the experience exciting.

“It’s not that exciting for other people, but through 23andMe I found the first person who I know is biologically related to me,” Epstein said.

Still, Epstein’s family did not allow her to purchase the health portion of the test.

“My mom was wary about me taking the health portion because she didn’t know if something was hidden in the terms of the agreement that would expose that information to our insurance company. If I were to have a preexisting condition, DNA companies could give this information to insurance companies,” Epstein said.

According to the 23andMe website, “On average, a customer who chooses to opt into research contributes to over 230 studies on topics that range from Parkinson’s disease to lupus to asthma and more.”

As of now, over five million users have received data on their heritage. CNBC.com stated that an update on Feb. 28, 2018, added another 120 regions to the database in order to make results more specific.

In recent years, however, there has been controversy over the selling of users’ DNA results to third-party organizations.

CNBC wrote that risks of sharing your DNA with genetic testing companies include hacking, non-customers profiting off of others DNA and company changes in privacy agreements. There has been speculation the fact that law enforcement knows such companies have users’ DNA, and the possibility that the federal government will want this information for law enforcement purposes.

Experts also say that the laws covering genetic privacy are not broad enough. According to CNBC, much of it is “uncharted legislative territory,” with the only law being the Genetic Information Nondiscrimination Act (GINA).

In July of 2018, 23andMe signed an agreement with GlaxoSmithKline (GSK), a British pharmaceutical company, giving it exclusive rights to 23andMe’s customer database for drug targets. According to Wired magazine, many users were angered by this, given that many had already signed and submitted DNA for testing.

23andMe still believes that transparency is a core policy of their company. Users must agree to a full set of conditions, which include all agreements and terms, before receiving a DNA test.

Business Insider wrote that users can delete their data from a 23andMe’s database, though it is a somewhat complicated process.

“You can submit a request that the company discard your spit or close your account,” Business Insider explained. “To find instructions to do so, go to its customer-care page, navigate to ‘accounts and registration,’ scroll to the bottom of the bulleted list of options under ‘account creation and access,’ and select the last one, ‘requesting account closure.’”


The print edition of this article was published Jan. 31. The original article stated incorrectly that 23 and Me shared information with insurance companies. Additionally, according to the 23andMe website, users must opt into research. “On average, a customer who chooses to opt into research contributes to over 230 studies on topics that range from Parkinson’s disease to lupus to asthma and more.”