Pending bankruptcy exposes how genetic code has power to explore, exploit

The pending economic failure of a company built on customers retracing their genetic pasts could pose a future security nightmare for those who lose control over what happens to their genomes.

The company 23andMe, based in Mountain View, California, announced on Monday that it has filed for Chapter 11 bankruptcy as its business prospects have continually declined since it was the first company in 2017 to be approved by the Food and Drug Administration to begin selling genetic tests.

However, the potential restructuring could lead to the company selling its most valuable asset: the DNA information of more than 15 million customers.

Ed Humes, a Pulitzer Prize-winning journalist and author, said he would suggest any customer who provided their genetic markers to 23andMe to go through a process to have that information deleted.

“This is definitely a cautionary tale here. With the company in bankruptcy, it’s unclear who will ultimately have possession of their most private data,” Humes said. “You can role the dice and see what happens or play it safe and delete that data and take full ownership of it.”

Humes noted that patients currently have federal protections regarding use of their medical files. But no protections exist for the genetic data held by companies like 23andMe.

“Doctors can’t even talk about your case in an elevator,” he said. “Meanwhile, your entire genome is up for sale to the highest bidder. The uncertainty is scary.”

Humes’ 2022 book, “The Forever Witness” is based on how a Snohomish County detective solved the 1987 killings of Tanya Van Cuylenborg, whose body was found in Skagit County, and her boyfriend, Jay Cook, whose body was later found some 60 miles away.

The case remained unsolved for decades until Cece Moore, a hobbyist using a laptop, discovered publicly available familial DNA that pointed to a possible suspect: William Earl Talbott II.

Snohomish County Detective Jim Scharf then sent a discarded coffee cup from the crime scene to be tested and the DNA profile confirmed what Moore had already suspected. Based off that DNA match, a jury then convicted Talbott in 2018 of both killings.

“This is the first cold case (Scharf) started looking at when he formed the squad in the early 2000s,” Humes said. “This is also the first murder trial and conviction using genetic genealogy anywhere in the country.”

Genetic genealogy, or finding matches through related family members, is basically the service offered by 23andMe, which exploded onto the scene eight years ago when customers began ordering tests and posting their genetic information online.

The information those profiles provided sometimes solved great mysteries.

“Families have been reunited. Abandoned children were able to find extended families. All that has been really good,” Humes said. “People have also been able to learn about their heritage which is often much more accurate, and sometimes unexpected, than the family lore.

“It’s a force for bringing people together. There is huge good in this,” Humes continued. “Understanding these genetic links also helped solve these cold cases. It’s also led to exonerations of those falsely convicted.”

The boom

The company began collecting saliva samples in 2017, but it had bigger plans: providing personalized health care, all powered by its trove of genetic data.

In the fall of 2021, 23andMe listed a $6 billion stock market value, and co-founder and CEO Anne Wojcicki sketched out a promising future in biotechnology and telehealth, according to the Washington Post. But the firm’s best days were already behind it.

Behind the company’s descent is a pioneering startup that built what it calls the “world’s largest crowdsourced platform for genetic research” – and spent heavily on business ventures that failed to revive its sagging prospects.

Wojcicki, a Silicon Valley luminary, resigned as CEO on Sunday, though she remains on the board.

“There is no doubt that the challenges faced by 23andMe through an evolving business model have been real, but my belief in the company and its future is unwavering,” she wrote on social media platform X.

Wojcicki added that she plans to bid for the company in bankruptcy. A spokesman told the Washington Post that she had no additional comment.

The company said that the bankruptcy filing is designed to “maximize the value of its business.” A spokesperson said that the company isn’t changing how it stores, manages or protects customer data and that any buyer will have to comply with applicable privacy laws.

Protect the code

But Humes, who lives in Santa Barbara and won the 1989 Pulitzer Price for specialized reporting for the Orange County Register, said 23andMe wrote in their user agreements that they could sell customers’ data.

“Most people don’t read those agreements,” he said. “They have no idea what they are signing over.”

For instance, most Americans once used birth certificates and later Social Security numbers as the personal identification that is unique only to them.

But criminals learned that obtaining Social Security numbers could give them access to bank accounts.

“Now we have the ultimate identity theft possible,” Humes said. “It’s just too tempting a target. What happens if the Enron of genetics gets a hold of this information?”

Imagine insurance companies taking information from what started as a benign family search and then using it to either deny coverage or hike the price of premiums based on a family history of disease.

He noted that consumers can replace a stolen credit card. “You can’t replace your DNA,” Humes said.

Another disconcerting aspect is consumers may be at risk even if they never paid 23andMe for a DNA search.

“If a sibling or a cousin or a nephew did it, it’s as good as them turning over your DNA,” Humes said. “That’s how they can identified offenders who have never given over their samples. We are finding them because your relatives have most of your DNA.”

Humes suggested that families have discussions about whether they need to take further action.

“When you are using these kinds of technology based on the blueprint of your organism, there has to be ironclad protections of your rights and your privacy,” Humes said. “That’s why banks have vaults. They don’t leave money setting out.

“Most of us follow the rules, but there will always be rule breakers.”