Do you trust 23andMe with your DNA? | The Tylt
DNA testing companies like 23andMe use customers' DNA to provide insights on their individual ancestral history. On top of that, 23andMe added the ability for customers to use the DNA test to make informed decisions about their health. From there, 23andMe developed a drug based on users' DNA, the rights to which it has sold to a Spanish drugmaker. As the relationship between 23andMe and the pharmaceutical industry evolves, can you still trust the organization with your DNA?
Do you trust 23andMe with your DNA?
The nature of at-home DNA tests has changed over the last few years. It is not uncommon to receive 23andMe kits for holidays and birthdays, and while it may once have been considered strange to pack up and send off your saliva to some unknown scientist, some estimates say over 26 million people have taken at-home DNA tests.
As the consumer DNA pool grows, 23andMe decided to develop a drug based off users' DNA and their projected health needs. Some customers feel this move is completely justifiable; 23andMe is helping people. According to New Scientist, this drug, which aims to treat inflammatory diseases, is likely to be the first of many as the company's data base becomes even more rich with "medically useful information." Jessica Hamzelou reports:
23andMe has sold in excess of 10 million DNA testing kits. More than 80 per cent of their customers have agreed to their data being used by the company for research and by scientists trying to understand the causes of diseases and how best to treat them.
But watchdogs are worried about what DNA testing companies could do with so much consumer information. With 23andMe's decision to sell it's anti-inflammatory drug, some are also concerned about profits made at the expense of 23andMe customers. Although 23andMe's terms of service explicitly state customers will "not receive compensation for any research or commercial products that include or result from [their] genetic information," the note is buried within other rules and guidelines, making it difficult for consumers to grasp exactly what they are signing up for beyond a key to their family tree.
As many critics point out, the decision to give your DNA to companies like 23andMe means you're also giving away the DNA of your family members, who may or may not consent to such a decision. Per USA Today's Edward C. Baig:
“You decide to contribute your DNA to one of these services and you have by default included your parents, your siblings if you have any, your kids if you have any or your future kids, and future nieces, nephews and everybody else,” says Jen King, director of consumer privacy at Stanford Law School’s Center for Internet and Society.
Privacy, big pharma, and the use of consumer DNA-tests in law enforcement are just some of the big-ticket worries when it comes to consumer DNA testing. With so many risks on the table, some say it's better to keep your DNA to yourself, rather than entrust it to companies who already have a wealth of information on the public.