23andMe's Bankruptcy, Is Your Data For Sale? The Risks of Consumer Biotech

23andMe, the California biotech company with almost 2 decades of genetic info from 15 million customers, has filed for bankruptcy 3/23/2205.  A combination of data breaches, a disastrous stock crash, and a failed subscription model has seen the company slash its workforce and slowly close its doors. 23andMe provided consumers the ability to "sequence their genome" and find out interesting information about themselves both trivial and medically serious. This data can be personal to the consumer or even damning if it falls into the wrong hands. 

The question now going around is whether or not this data is at risk of being sold to the highest bidder, despite there not being many in line to buy at the moment. 23andMe assures that it will ensure the law is carried out to protect its data, but the reality is that there is not much regarding biotech companies like itself. HIPAA may be the first thing that comes to mind, which is a law that protects the disclosure of health information without the patient's consent. However, HIPAA does not cover direct-to-consumer products such as 23andMe, meaning the the answer is complicated as to whether or not their data will be protected. There are some states with laws which may pertain to this kind of genetic info, but the most do not have any regulation, this is not even to mention how it may be dealt with in countries outside of the US. As 23andMe navigates bankruptcy users are still able to view and delete their data, but there is no doubt all 15 million of its customers will know to remove their sensitive information before the company's tech potentially changes hands. 

Sources: 

https://www.cnbc.com/2025/04/17/23andme-bankruptcy-investigation-genetic-data-congress.html

https://www.npr.org/2025/03/24/nx-s1-5338622/23andme-bankruptcy-genetic-data-privacy

The Rise of Genomic Data Sharing

Each year the amount of information about humans increases as scientific research increases. Lately, a huge hit amongst human beings is figuring out their own genomic sequences so that they may better themselves or be more prepared to what their futures hold. This article explains how this can be a useful tool, but we should still "proceed with caution." This warning is due to the fact that scientists, as well as this author, are predicting that one's genomic data can be leaked- allowing our government to one day be able to possibly use this information against us in a plethora of ways. I found it to be a bit alarming that this information could be used against us, for example if insurance providers knew how much of a liability you were, health wise, then they might be more reluctant to provide you with their insurance. There are many different outcomes, each with it's own pro's and con's.

http://www.the-scientist.com/?articles.view/articleNo/37592/title/Proceed-with-Caution/

http://www.nature.com/scitable/topicpage/genomic-data-resources-challenges-and-promises-743721

Henrietta's Family Finally Gets a Say in Genetic Destiny

At John Hopkins Hospital in 1951, two thin silvers of tissue were removed from a Hernietta Lacks cervix. These cells were taken from a cancerous cervical tumor termed HeLa, which later multiplied wildly and continuously; which had never been seen before. Henrietta’s cells have become an enormous part for research genes that are the origin and that defeat cancer. Her amazing cells also aided in developing drugs that treat herpes, influenza, hemophilia, and even Parkinson’s disease. Other important medical advances were a polio vaccine, cloning, gene mapping, and vitro fertilization.

After decades of using these cells to produce widespread discoveries on diseases, Henrietta Lacks and her family had no knowledge of what her cells were being used for. This meant that the companies using these cells were capitalizing on the discoveries created by Lacks' HeLa cells; while this proceeded for years, her family had received no compensation. Another huge issue that appeared this year for the Lacks family was that a German scientist mapped out the full HeLa genome and made the results public.  

 

HeLa Cells stained to highlight specific parts of each cell. 

The National Institute of Health and the Lacks' family have come to an agreement where the Lacks family has control of the access to the HeLa genome. This means that researchers who receive NIH funds will have to apply to use the data controlled by the Lacks. A laboratory that is not funded by NIH does not have to follow these rules. The Lacks family hopes that everyone can respect to their privacy. What if it was you or your family’s privacy that was being taken advantage of?

The privacy problem that the Lacks family is facing is not an unfamiliar problem. There are plenty of other cases where doctors and researchers are taking advantage of their patients left over bodily parts. It has been seen when a patients parents learned that an examiner had kept a part of their son’s brain. It also occurs often at hospitals where blood is drawn and tested. A report was issued in 1999 by RAND Corporations that says more than 307 million tissue specimens are stored in the United States and each year it grows.

  I feel that these specimens will help make a difference in our world. These things can find information on certain medical issues; medications can be made, and even cures to diseases through these “stolen” specimens. People do have the right to their privacy, but why stop the progression of science. It’s as though most people are not as worried about the good that is coming from these specimens but the money that they are missing out on. People need to see the bigger picture of what we can do for other people and our future. I respect that people have want their privacy; and feel that it is a good beginning to a privacy act between the agreement with the Lacks family and the NIH. We learn a lot from specimens that are donated or used unknowingly. Hopefully one day we can eliminate this problem and come up with a proper understanding.

http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/index.html?iref=allsearch

http://news.nationalgeographic.com/news/2013/08/130816-henrietta-lacks-immortal-life-hela-cells-genome-rebecca-skloot-nih/

Bioethics Panel Urges More Gene Privacy Protection

Gene-mapping has become an important factor in providing more useful health and medical information.  The idea of being able to detect any diseases that might affect an individual in the future can be thought of as a great thing, especially since the costs of this test have decreased, including in comparison to other single gene mutation tests.  It has been found that DNA decoding is legal in more than half the US, but there is now concern about the privacy issues that might prevail.  For example, if gene-mapping becomes common practice in a visit to the doctor's, who will be allowed to see the results, when can the test can be taken, and how will it be administered?  How long will it take for a law to pass that prohibits the sharing of genetic information from clinical studies?  Will doctors be able to warn patients about any other diseases they may have if they are only specifically checked for one?

Although a law has already been passed that prevents employers/health insurers from discriminating against genetic information, life and long-term care insurances have not been incorporated into that law.  Electronic storage of such information has not even proven to be fully secure.  These are just a few of the worries that have peaked interest in looking more into gene-mapping before it becomes a test accessible by 100% of the public population.

 

I never thought of gene mapping to be available as a regularly run test so soon.  The fact that the expense of the test has even come down surprises me because I would assume costs to remain high, if not increase once it is completely available to the public of all US states.  One concept I never thought of when it comes to privacy has to do with hereditary information.  If a person is diagnosed with an inherited disease, he/she might show results to a relative that could have it.  If the relative never wanted to know about a medical condition, that could be a violation of his/her privacy.  I was also surprised to read that a doctor could keep information private about other possible diseases a patient might have if only one specific mutation is being looked into (unless a waiver is signed).  It is a shame that there are even loopholes with something as personal as the release of one's genetic data.