23andMe, a biotechnology company offering genetic testing and personal genetic data analysis services, was established in 2006. The company’s primary goal was to help individuals explore their genetic heritage and gain more information about their health. However, the company is going bankrupt.

The bankruptcy filing of the genetic and biotechnology company 23andMe in the United States has sparked an interesting debate. Federal agencies are trying to determine what the company, which holds the genetic information of hundreds of customers, should do with this data. The company filed for bankruptcy with the Missouri Eastern District Bankruptcy Court on Sunday local time. Rumors of the company going bankrupt had started just last week, causing concerns about what will happen to the sensitive data they hold. The ordering of genetic kits and the rising interest in people’s origins have made such biotechnology companies more common in recent years. 23andMe provided customers with detailed information about their ethnic backgrounds through DNA testing. Customers would order a DNA test kit from 23andMe, send a saliva sample to the laboratory with the kit, and receive the result of the genetic analysis on an online platform.

The ETHICAL ASPECT OF DNA TESTS

23andMe claimed to have taken various security measures to protect users’ genetic data. According to the company, genetic and personal data were stored in encrypted format, protected by security walls and monitoring systems to prevent unauthorized access. However, criticisms exist regarding the sharing of such personal genetic data with third parties or its use in health research. Collaborations with pharmaceutical companies and research institutions can also lead to backlash. For instance, it is known that 23andMe has shared research data with pharmaceutical companies like Roche and GSK. Although the data were separated and anonymized from personal identifying information, it is argued that this could pose a risk to customers’ personal data. Additionally, 23andMe faced a major data breach in October 2023, where approximately 6.9 million users’ data were leaked. It was alleged that hackers gained access to sensitive information like users’ ethnic origins and genetic data. Following this attack, most of the 15 million customers tried to remove their genetic data from the company records, damaging the company’s reputation and reducing its revenue, leading to bankruptcy.

WHAT WILL HAPPEN TO THE COMPANY’S DATA?

Currently, 23andMe customers are advised to delete their data. The California Attorney General’s office issued a warning urging those who have used the biotechnology company’s services to delete the data from the platform and request the destruction of their samples from the company. Representatives of 23andMe defended in an open letter sent to their customers that their data was secure.

RISK OF GENETIC DISCRIMINATION

When genetic data is misused, it can lead to many risky situations. For example, insurance companies may increase health insurance premiums or deny coverage based on individuals’ genetic predispositions. The Genetic Information Nondiscrimination Act (GINA) in the U.S. prohibits genetic discrimination, but such legal protections are not available in some countries. Moreover, employers may discriminate against individuals based on their genetic predispositions. Individuals with potential physical or mental health risks may be barred from employment or deprived of promotion opportunities. Genetic testing companies may share users’ data with pharmaceutical companies, research institutions, or advertising agencies with or without user consent, leading to unethical use of the data in the advertising sector. If an individual is identified as genetically predisposed to weight gain, they may be targeted with ads for diet products or fitness programs more aggressively. Genetic data is used in criminal investigations by matching it with DNA samples left at crime scenes. However, the possibility of wrong analyses or malicious manipulations posing innocent individuals as criminals remains.

BIOTERRORISM AND GENETIC THEFT

Additionally, there are some areas of genetic data use, seemingly science fiction, but underlined by experts as actual risks. Malevolent actors could develop biological weapons that could harm certain genetic groups. Genetic data could be used to identify targets for such attacks. Theoretically, personalized bioterror attacks could be conducted using genetic information. Studies on genetic bio-weapons show that this risk is theoretically plausible. Furthermore, American law professors have expressed concerns about the possibility of celebrities’ DNA being stolen soon. Prof. Dr. Liza Vertinsky and Prof. Dr. Yaniv Heled, from the University of Maryland and Georgia State University, respectively, stated in a piece for The Conversation, “Imagine creating a child from DNA gathered from a hair or a piece of skin from your favorite movie star. “DNA theft targeting celebrities has previously made headlines with pop singer Madonna filing a lawsuit in 2018 to prevent the auctioning of items containing her DNA, including hairbrushes and underwear, by former art advisor Darlene Lutz.