CNBC will air “DNA Testing: The Promise and the Peril,” a dive inside the explosive rise and recent decline of direct-to-consumer DNA testing.
This multi-billion-dollar industry that was virtually unheard of 20 years ago has now convinced an estimated 30-million paying customers to hand over their most sensitive personal information–their genetic code.
In return, leading companies like Ancestry and 23andMe promise to reveal secrets about their customers’ ancestral past or their risk of developing certain health conditions. But how well is the industry delivering on that promise?
Reported by CNBC’s Scott Wapner, the hour-long original documentary explores the remarkable potential of consumer genetic testing–its ability to find long-lost family members, uncover predispositions to life-threatening diseases, help researchers develop new drugs and assist law enforcement in solving violent crimes.
But unlocking the secrets of the human genome has also raised concerns: how accurate and reliable are test results? How much can they actually tell about us? What are the risks to our personal privacy, and who ultimately should have access to consumer data?
Wapner examines what made consumer DNA test sales more than double in 2017, then soar even more the following year. Clever advertising backed by nearly a quarter-billion dollars in marketing muscle turned genetic testing into a phenomenon by 2019, and discovering family origins was the main attraction. But according to geneticist Adam Rutherford, the tests don’t tell us where our ancestors are from.
“They tell us where people on Earth who have similar DNA to yours live today,” says Rutherford. “And from that we infer ancestry.” Results can also be wrong, as we learn from one DNA test-taker who was shocked to learn that he was only 58% Korean. Two years later, his results had changed to 95% Korean–the result of more people having taken the test, particularly from underrepresented countries.
At 23andMe, one of the most successful and controversial companies in the home DNA testing business, Wapner meets Anne Wojcicki, its unconventional CEO and Co-Founder. Wojcicki shares her passion for the industry and her company’s commitment to revolutionize healthcare.
“If you want to drive a change, you better put your running shoes on,” Wojcicki tells Wapner. “Why do you think I wear shorts and a T-shirt every day? Like, because I’m in for the marathon.” Wapner reports on the company’s multi-year battle with the FDA, as well as the discovery of its first drug using data collected from consenting customers.
Much of the concern over consumer genetic health tests is the reliance by some companies on genotyping, a technology that looks for specific mutations on specific genes. Wapner introduces us to a woman who is convinced her life was saved as a result of taking such a test. But researcher Dr. Mary-Claire King says genotyping risks missing thousands of other potentially deadly mutations, saying, “It isn’t necessary to use a technology that is now ten years out of date to ask a question that we care about in the present day.”
Wapner also examines the controversial use by law enforcement of consumer DNA test results to identify suspects in unsolved murders and rapes. Genetic genealogist CeCe Moore tells Wapner how she used DNA test results to solve a 30-year-old double-homicide in just two hours. But New York University law professor Erin Murphy warns that such use threatens the privacy rights of future generations. “Even if you consent,” says Murphy, “it doesn’t really mean that your whole family has consented.”
Privacy is also at the heart of a story Wapner explores out of western China, where the government is suspected of using DNA as a tool of surveillance. Sophie Richardson, China Director of Human Rights Watch, says ethnic minority Muslims like the Uighurs are having their DNA taken as part of what the government says is a plan to crack down on terrorists. Two Uighur refugees share their stories about how the practice has affected their lives.
The documentary ends with reports that a recent slump in sales of consumer DNA tests is forcing the industry to reexamine its business model as it faces an uncertain future.
“DNA Testing: The Promise and the Peril” provides a comprehensive look at the debate over the power of consumer genetic tests, the limitations of what they can reveal, and the balance the industry must strike to preserve the privacy of those who take them. As just a handful of companies build the world’s largest private DNA databases and sell access to outside companies, some say it’s time to step back and consider the critical questions this controversial technology raises.
The documentary special airs on Monday, May 11th at 10pm ET/PT.