The risks and rewards of at-home genealogy testing
In 1953, James Watson and Francis Crick announced that the shape of DNA was a double helix. This monumental discovery of the structure of DNA empowered generations of scientists to unlock many mysteries of the human body.
In the nearly 70 years since that Nobel Prize-winning breakthrough, the Human Genome project sequenced the makeup of the entire human body, and a new at-home genealogy testing industry was born.
Companies including Ancestry.com and 23andMe have capitalized on new technology that allows customers to spit in a tube and mail in their saliva sample to labs to reveal information about their genetic make-up and ancestral origins.
This week on 60 Minutes, top intelligence officials from the United States government told correspondent Jon Wertheim about DNA data aggregation by foreign nations and the potential threat it poses to the United States.
"Sometimes Americans or people around the globe don't even know the value of their DNA, [or] that it even has value," said Bill Evanina, the former Director of the National Counterintelligence and Security Center. "But it's your single, sole identifier of everything about you as a human being."
Evanina served under Presidents Barack Obama and Donald Trump before he resigned from his senate-confirmed position earlier this month. He said each person has a fiduciary responsibility to safeguard their DNA.
When DNA samples are aggregated into large datasets, their value increases.
Law enforcement officials told 60 Minutes they are concerned about the lack of public awareness over who may eventually have access to an individual's DNA data after a sample is submitted through an at-home genealogy company. The U.S. lacks federal regulations specific to third party aggregation and the sale of genetic data.
"In the U.S., your HIPAA law allows you to have protection based upon what's called covered providers, your health care company or your health care provider, but not third-party aggregators or collectors of data like genetics [providers]," Evanina said.
Anne Wojcicki, the cofounder and CEO of direct-to-consumer DNA testing firm 23andMe, told 60 Minutes that she believes that her company adheres to stricter security measures than HIPAA requires.
"If I want to provide my customers with the best data security, there's all kinds of standards that are out there that do not involve HIPAA," Wojcicki said. "We have an incredibly sophisticated, nimble team that thinks all day long about data security, privacy, how do we make sure that we are doing everything reasonably possible to protect our customers' data."
In 2018, 23andMe began a partnership with the pharmaceutical company GlaxoSmithKline to develop medicines based on human genetic information. Wojcicki said that her company never defaults its customers into the database the firm uses for research, but that 80% of 23andMe's clients have opted in.
"If you talk to anyone who is sick, especially anyone with a terminal illness and you ask them what they want, what they're looking for is a treatment or something that's going to benefit their children," Wojcicki said to Wertheim. "And we learned the most important thing that 23andMe could do would be to put our own money into developing ways our customers are going to benefit from the human genome. But I should emphasize we are reinvesting all of our money into therapeutics development."
True to her promise of using the company's technology for the public good, last week, 23andMe launched an interactive tool that the company says, "allows people to see how certain non-genetic factors may impact the risk for hospitalization due to the [COVID-19] virus." On its website, the company says the tool was created using data from at least 10,000 people who enrolled in the study and provided saliva samples.
These samples may help advance scientific understanding of COVID-19, while also illustrating the potential that lies in large troves of DNA data, built on a foundation laid by scientists Watson and Crick nearly seven decades ago.
The videos above were produced by Keith Zubrow and Sarah Shafer Prediger. They were edited by Sarah Shafer Prediger.