In March, 23andMe— one of the most prominent companies in the often hyped and misleading direct-to-consumer genetic testing markets— filed for bankruptcy protection. This step raised significant alarms regarding the fate of their customers’ genetic data. With about 15 million clients, the company has been inundated with data erasure petitions in the days since the suit was filed. That leaves Interim Chief Executive Joseph Selsavage with the daunting task of rebuilding the company’s customer trust. Simultaneously, he has to wrestle with the realities of a company in deep financial distress.
Since the bankruptcy announcement, nearly 1.9 million customers chose to join the fight. That’s roughly 15% of their user base that has taken the steps necessary to delete their genetic data. This surge in deletion requests reflects growing apprehension surrounding how the company will handle sensitive genetic information during and after the bankruptcy process. As regulatory challenges and calls for greater data privacy protections have increased, 23andMe’s data-sharing practices have faced increased scrutiny.
Customer Concerns and Data Deletion
The bankruptcy filing has the environmental and public health community buzzing. Due to its history of sharing data with third-party researchers for health research applications, the public fears 23andMe won’t sufficiently safeguard its customers’ genetic data. His fear is furthered by the fact that more than two dozen states have filed lawsuits challenging the sale of personal data. As an example, in New York the Attorney General acted to ensure that state residents don’t lose control over their genetic information.
Understanding that people want transparency and the ability to easily control their privacy needs. They can accomplish this by visiting the Research and Product Consents section of their account settings. This new feature lets users withdraw general consent for use of their genetic data in research, putting an important degree of control into users’ hands. 23andMe’s privacy policy says the company will retain some account information while processing your data deletion request. This involves the email address used to send your request, a unique ID number through which we track your request, correspondence regarding questions or complaints you raise, and terms of service legal agreements, all kept for a legally mandated period of time.
The Role of Regulatory Challenges
The intense criticism and concern that 23andMe has attracted is hardly novel. The social media company has long come under fire from regulators over its handling of user data. At first, it was all about making genetic data public — a gift to the advance of science. Now, it has raised red flags among consumers concerned about the potential for misuse.
23andMe is now facing bankruptcy proceedings. Even more questions remain about how they will process current customers’ contracts and their pending duties. Genetic Information, date of birth and sex The company has informed you it will not retain this information. It’s how they fulfill their legal obligations to engage. Their policy makes it clear that consumers have the right to request for their information to be deleted. They will continue to retain enough de-identified information to meet regulatory requirements.
Steps for Customers to Protect Themselves
Given all that has been happening, consumers must go above and beyond to ensure their safety. Those who shared their DNA with 23andMe should review their account settings and understand how to withdraw consent for research. Taking these steps is essential to guard against the risks posed by the potential sale or misuse of their genetic information.
Selsavage’s leadership will be especially crucial as 23andMe works to restore faith among its consumer base in the company’s intentions in this uncertain time. Their commitment to transparency and providing users control over their genetic data is strong. This commitment will be fundamental in determining its future sustainability and acceptance in the marketplace.