Are you wondering how the 23andMe bankruptcy issues affect you and your DNA results? In this post, find out what you need to know and whether you should take steps to protect your data.
Myself and several of my family members have DNA results with 23andMe, and so obviously I have been following news about the company very closely. My primary concern is that our personally identifiable DNA data stays with 23andMe and it does not end up in the possession of a company that wants it for reasons that I have not agreed to.
The reason that we took DNA tests with 23andMe was to learn more about where our ancestors may have lived over the past several hundred years. We were also interested in finding people who are related to us (i.e. DNA relatives) because identifying our ancestral connection can often help us learn more about our ancestry.
Some people took a 23andMe test to explore their health data, which is something that the company also focused on. This health focus may be a part of cause of the company's current financial problems.
I've always enjoyed my 23andMe results because they provided insight into my ancestry that other companies didn't. For example, the Ancestry Composition Report shows very small (i.e. trace) percentages matching ancestral regions.
In addition, the chromosome browser allowed us to view exactly which DNA segments we shared with our DNA matches, which was very useful for chromosome mapping on DNA Painter. I also enjoyed the ability to see which DNA segments matched ancestral regions on 23andMe, which helped me learn about which ancestors passed down specific regions that I show in my DNA.
You might notice that some of the information that I mentioned is no longer available on your 23andMe results. This is all a result of some of the things that went wrong with the company.
What went wrong with 23andMe?
Most of us know 23andMe as a direct-to-consumer DNA testing company that provides its customers with an ancestry composition report (i.e. an ethnicity estimate) and DNA matches, as well as health reports that describe one's risk for certain illnesses based on genetic analysis.
This is a simplified explanation of the main cause of 23andMe's financial struggles.
Not enough profits
The company had been struggling to be profitable for the past several years. Most customers who purchased a DNA kit from 23andMe only spent money with the company a single time.
After the initial expense for buying the DNA kit, which currently costs around $99, the customer could use the website and access their DNA results for basically forever without every having to give 23andMe any more money.
Since one of the company's main offerings is health data, the company had to spend a lot of money on health and genetic research. These large research expenditures combined with limited revenue opportunities led to financial struggles.
The company did try to offer health data subscription services, such as the 23andMe plus subscription that has been offered since 2020. Whether due to marketing failures or a lack of interest by the public, not enough people have been willing to pay for a subscription to health data in order to keep the company profitable.
What is going to happen with the company now?
23andMe is currently going through a Chapter 11 bankruptcy process, which it voluntary entered into. This bankruptcy process allows companies to continue to operate as normal and submit a plan to the court for reorganization of its financial obligations.
During this bankruptcy process, the 23andMe website is still accessible and you can even still buy a DNA test kit.
The entire process is overseen by the courts and the company's plans must meet certain legal requirements. 23andMe's plan seems to be selling the company's assets, which has sparked alarm and confusion.
Ideally, the buyer of the DNA data will keep the company running and hopefully figure out a way to get the company profitable and avoid this happening again in the future. I'd like to be able to continue to access my DNA results, and I'm sure many people agree.
Why I'm not deleting my data
I'm not planning on deleting my data for a few reasons. First, I think that mass deleting of DNA data will harm our genetic genealogy community.
If everyone deletes their DNA data, the company has nothing left and will certainly not survive in order to allow us to use our DNA results for genealogy research.
The second reason that I am not planning on deleting my DNA data is because when the data is eventually sold, I believe it there is a good chance the pharmaceutical industry will end up with access to the data in some way because this is where it will be of the most value.
Genetic health information available from our DNA is only really valuable in large data sets without personally identifiable information and it can be very useful for the development of medications and other therapies. In addition, 23andMe already sells our aggregated, anonymized data to pharmaceutical companies.
In other words, I think there is a very low risk that my data will be used for anything else other than the uses that I already agreed to when I signed up to use 23andMe,
So, I've decided to take the small risk to my personal privacy of leaving my data on the site in exchange for the possibility that my anonymized data will be used to either a) keep the company running as is and genealogy research will be furthered or b) the data will be used to further health and science research.
Should you delete your data?
Of course, the choice of whether to delete your data is yours alone. If you decide to delete your data, you don't need to question your decision.
My goal in writing this article was to explain a little bit about what is going on with the company and what I am planning to do in relation to my own personal data. I fully support you making the decision that you feel is best for your situation.
Conclusion
I hope that you enjoyed reading this post about the 23andMe bankruptcy and what it might mean for the genetic genealogy community and your personal data.
If you have any questions about something that you read in this post, or if you would like to share your take about what is going on, I would love to hear from you in the discussion below.
Thanks for reading today!