Oprah Winfrey Also Gives Thumbs Up to 'Josangchajgi'... Where Did the Genetic Information of 15 Million People Go Amid Bankruptcy Filing? [Tech Talk]

Tracing Ancestry with Saliva: Spotlight on the Fate of 15 Million People's Genetic Data After 23andMe Bankruptcy
Valuable for Precision Medicine and Cancer Treatment
Concerns Over Potential Misuse Without Proper Safeguards

American genetic testing company '23andMe' filed for bankruptcy protection on the 24th (local time). The company became famous for its service that analyzes customers' genes to inform them of disease risks and trace distant ancestors. The issue now is the future whereabouts of the genetic information of 15 million people collected by 23andMe. Genetic information is important data that can be used for disease treatment, but if mismanaged, it risks exposure to third parties.

Famous talk show host Oprah Winfrey also named the 23andMe analysis service as one of her "favorites." Photo by AFP Yonhap News

A Startup Pioneering Single Cell Biology

23andMe is an American genetic analysis company founded in 2006 by CEO Anne Wojcicki and others. It is recognized as a company that pioneered the field of 'single cell biology' among various genetic analysis methods.

The core of 23andMe's technology is SNP genotype analysis. When cells in our body divide, they replicate the DNA genetic base sequence, but the replicated genes are not 100% identical. One out of every 1,000 base sequences undergoes a mutation, or 'typo.' This mutation is called an SNP genotype. 23andMe analyzes the differences in SNP genotypes within a single cell to 'identify' a specific person. Sample collection is simple. There is no need to draw blood or insert a swab into the body; just spitting saliva is enough to analyze the cells contained within.

23andMe's genetic testing kit. Customers spit into the container and send it to the headquarters, where their genes are analyzed using single-cell analysis methods. 23andMe website

The SNP genotype differences among all humans amount to only about 0.1%. However, that 0.1% creates our diversity in appearance, physical traits, and potential genetic diseases. By tracing the subtle differences in SNP genotypes backward, one can also accurately determine their lineage.

Thanks to this, 23andMe gained early fame for its service that 'certifies' ancestry from a racial perspective. This was especially enthusiastic in the melting pot society of the United States, where various races are mixed. Famous talk show host Oprah Winfrey also named 23andMe's analysis service as one of her "favorites."

Interest in the Whereabouts of 'Genetic Information of 15 Million People' After Bankruptcy Protection Filing

Having become famous, 23andMe went public on the Nasdaq in 2021 through a merger with a Special Purpose Acquisition Company (SPAC), reaching a market capitalization of $6 billion. However, the stock price did not continue to rise. Although the ancestry tracing service was popular, operating losses continued to increase, and the company failed to find a business model to reduce losses. Additionally, a hacking incident in 2023 that leaked genetic information of 6.9 million customers damaged the company's image.

As a result of these setbacks, the stock price fell below $1 in early 2024 and failed to recover to the $1 range in March this year. Nasdaq has regulations that allow delisting companies whose stock price falls below $1. Ultimately, on the 24th, 23andMe filed for bankruptcy protection under Chapter 11 of the U.S. Bankruptcy Code, and CEO Wojcicki resigned.

What will happen to the genetic information of 15 million people collected by 23andMe so far? The data was collected mainly from American customers of diverse races, and no other place in the world holds more genetic information than 23andMe. The second largest, the UK Biobank, has genetic information from only about 500,000 people.

The SNP genotype samples of 15 million people with diverse genetic traits can contribute to numerous scientific studies. They are useful for developing personalized new drugs by pinpointing genotypes that manifest rare diseases or identifying genes that cause specific cancers. In fact, after going public, 23andMe focused on research and development (R&D) collaborations with biotech companies based on the genetic information collected. In 2023, it provided data for two tumor-related new drug studies.

"Individual Genetic Information Is Not Being Protected"

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American media such as The Wall Street Journal (WSJ) reported that after filing for bankruptcy protection, 23andMe plans to sell valuable assets. This may include 23andMe's proprietary single cell analysis technology and the collected genetic information.

The possibility that human genetic information could be traded cannot be ruled out. Earlier this month, the American medical journal 'The New England Journal of Medicine' published an analysis stating that "the personal information collected by 23andMe is not sufficiently protected."

One of the authors of the paper, Glenn Cohen, a professor at Harvard Law School, pointed out, "The data held by 23andMe was voluntarily provided by customers, and if 23andMe shares the data (with other companies or organizations), those who provided the information have almost no say." Genetic information, if misused, can cause serious health and social problems. For example, companies could refuse customers' enrollment in certain insurance products based on the information or establish surveillance systems that infringe on privacy.

In an interview with Harvard's campus media 'Harvard Gazette,' Professor Cohen emphasized, "People are still unaware of the risks genetic information can pose to them," and stressed, "Genetic analysis companies should be included under personal data protection laws, and legislation should be proactively established to prohibit customer discrimination based on genetic information."