Genetics testing company 23andMe recently filed for Chapter 11 bankruptcy following significant challenges, including a data breach and workforce reductions. As the company searches for a buyer, concerns about the handling of sensitive user data have emerged.
One core worry is that user data may be included in the sale to a new owner. This raises questions about potential changes to privacy policies.
Users could face a reduced level of privacy, with their data possibly being sold to third-party companies. The implications of this are particularly alarming because, unlike genetic information managed by healthcare providers, 23andMe’s data is not protected under the U.S. Health Insurance Portability and Accountability Act (HIPAA).
HIPAA includes strict rules about access to medical information, while 23andMe’s policies operate outside these regulations. A new buyer might have greater freedom to share or sell user data.
On the positive side, U.S. citizens benefit from the Genetic Information Nondiscrimination Act (GINA), which protects them from discrimination by health insurance companies and employers based on genetic information. While fears about data accessibility exist, this law provides some degree of protection against adverse decisions related to employment or insurance.
For concerned users, it may be wise to take proactive steps, especially considering the current landscape of data security and emerging technologies such as AI. Users can delete their data while preserving a personal copy of results.
The process involves logging into their account, navigating to settings, and following specific prompts to download or delete their information. Users can also revoke permissions for 23andMe to retain DNA samples or share data for research.
Although discussions about 23andMe’s future are ongoing, users still have time to assess their options. Any new terms will require user consent before coming into effect.
Given the sensitivities surrounding genetic data and privacy, it’s crucial for individuals to understand their rights and determine their next steps.