It’s important to understand who owns your data after it’s analyzed and what companies are doing with it to profit.

Critics of home DNA test kits argue that these company’s primary interest isn’t whether you’ll re-connect with a forgotten relative or find out you’re susceptible to certain health conditions, but rather owning your genetic data and figuring out who they can sell it to. After discovering who owns your DNA test kit data and how it can be used to profit, you may think twice before ordering a DNA test it for you or someone else.

Who Owns Your DNA Test Kit Data?

It might surprise you that you don’t own your DNA test kit results in most cases. After you send your DNA sample to a gene testing firm, the company collects, analyzes, and stores your test results. While popular DNA testing company Ancestry claims in its privacy policy that you own your data, a look at their working practices indicates something different. Except for some privacy opt-in measures that are part of your agreement with the company, you have no rights over the data that it collects about your DNA.

While a business such as Ancestry allows you to decline to share your DNA test results with third-party entities, it has no option that allows you to decline to share your sensitive DNA data with its business partners. Business partners are different than third-party companies that want your data for their own strategic purposes. Gene testing companies use the phrase “business partners” to describe the genotyping laboratories, information technology (IT) storage providers, and IT communication service providers that they use to fulfill your DNA test kit order.

Should At-Home Genetics Testing Firms Be Known by the Company They Keep?

Business partnerships with scientific laboratories barely raise eyebrows with most consumers who buy at-home DNA test kits. However, business partnerships with large companies that have a history of disregarding consumer privacy rights relating to their large data gathering activities make even the most apathetic buyer wary.

Anne Wojcicki is the co-founder and CEO of at-home genetic test company 23andMe. When she and two other colleagues founded the company in 2006, Anne was married to Sergey Brin, who is the co-founder of Google. While the couple divorced in 2015, 23andMe still has business ties to Google through the 23++ Google Chrome web browser extension that adds functionality to 23andMe’s website. Google Ventures also provides venture capital funding to 23andMe, and Facebook billionaire Yuri Milner is an investor in the consumer gene testing company.

23andMe’s connection to Google is significant considering the latter’s continued data privacy challenges. Jamie Court, who is president of Consumer Watchdog, said that Google does more than just collect data about how the public surfs the web. He warned in 2008 that the internet giant’s new browser and software enabled the company to send information from inside users’ computers to its servers.

Since 23andMe’s launch in 2006, the company has served over 10 million people, and it has one of the world’s largest DNA libraries. This huge database of the public’s genetic information is arguably the basis of the company’s financial worth of $2.5 billion. Anne Wojcicki has made an estimated $690 million gathering DNA data. Her ex-husband Sergey Brin has racked up over $55 billion gathering information at Google. How much do you expect to profit from handing over your sensitive DNA data to a gene testing company?

23andMe isn’t the only company with ties to large, controversial IT companies. Ancestry allows you to log in to its services through Facebook. The company collects information about you from your Facebook profile depending on your privacy settings. It’s unclear if Facebook can access your Ancestry data upon login.

How Do Genetics Test Companies Protect Your DNA Test Data?

While data sharing with business partners and third-party entities is unnerving enough, your DNA data is also subject to data leaks via hackers or employee sabotage. Well-known gene testing companies use technical, procedural, and physical safeguards to protect DNA data elements that are in their possession. Federal and state data privacy laws and international Privacy Shield Frameworks are the basis of these safeguards.

Most DNA test companies develop data security programs that include encryption to protect customer data during transmission and storage. They also use intrusion detection software to stop cyber attacks on their networks. Many use de-identification and data segmentation tactics to make sure that pieces of DNA data aren’t easily associated with specific customers. You’ll also have the option to delete your account and to request destruction of your physical DNA sample.

Companies such as Ancestry acknowledge that security measures can’t stop every data breach. This was recently confirmed when hackers attacked MyHeritage networks and stole over 90 million customer email addresses and account passwords.

How Ownership of Your DNA Test Kit Data Can Easily Change Hands

Unless you ask a DNA test company to destroy your DNA sample and delete your account, it’s very likely that your DNA data will linger in the company’s databases indefinitely. If your chosen company is trustworthy and experiences no cyber attacks from thieves, you’ll probably have no problem keeping your DNA data on file with them. However, there are some exceptions for which you should be aware.

Nothing stays the same for long in the business world. Market developments such as the introduction of stricter laws and innovative evaluation methods that lower DNA test costs prompt company leaders to make decisions to avoid threats and take advantage of opportunities. While shareholders benefit from these corporate maneuvers, business leaders are likely to make DNA data privacy concerns a low priority.

Companies such as 23andMe, Ancestry, and MyHeritage are household names when it comes to direct-to-consumer DNA testing, but there are many other lesser-known companies fighting for market share. According to a 2018 Gizmodo article, the at-home DNA test sector is already booming, but it’s going to blow up in the next few years. Industry insiders attribute high growth in this sector to aggressive marketing campaigns and lax regulatory oversight.

Mergers and Acquisitions

What goes up usually comes down hard for business operators. It’s likely that heavy consolidation will come on the heels of this season of start-up growth for consumer DNA test companies. Since corporate DNA databases are very valuable to businesses across multiple industries, it’s likely that many consumer DNA test companies will be impacted by mergers or acquisitions.

If your chosen DNA test company merges with another firm, that firm gets access to your DNA test data. While Ancestry claims that you own your data and are in control of how it’s used, 23andMe appears to be more transparent with its policies and rules. According to 23andMe’s privacy policy, it considers itself to be the controller of your DNA data and personal information because it determines how your data will be processed to fulfill your service order. Depending on the new firm’s policies, you could lose more control over how your data is used.

Your chosen DNA test company could be purchased by another genetic test firm, a pharmaceutical business, or an insurance agency. If this occurs, your DNA data will belong to the acquiring business. 23andMe disclosed in its privacy policy that it could undergo a sale of all or part of its assets. It clearly stated that your DNA data is part of its assets and would be transferred to another company during an acquisition. 23andMe’s admitted ability to sell only part of its assets enables it to get around its current policy of not selling your DNA data and personal information to third-party entities.

Policy Changes

The easiest way for ownership of your DNA data to change hands is through a company policy change. Most consumer DNA test companies have privacy policy clauses that state how the company can change its practices at will. If it abides by the legal requirements to notify users of material changes in their policies, genetic testing companies can give third-party businesses access to all or part of your personal information and DNA data. They usually give consumers a 30-day notice of these types of privacy policy changes.

Using Your DNA Test Kit Data to Market Health-Related Services

The vigorous marketing campaigns that drive growth in the consumer DNA test market are largely based on people’s desire to find out health-related information about themselves. While regulatory oversight of gene testing for ancestry tracking purposes is flexible, the U.S. Food and Drug Administration has stopped most companies from offering DNA tests that claim to detect genetic health threats. The issue is accuracy.

Doctor Approval is the Prescription for Genetic Testing Success

While consumers are optimistic about at-home genetic testing as a medical tool, physicians are more cautious. They understand the science behind consumer and commercial-grade gene testing. Due to advancements in technology, the costs of DNA tests have decreased dramatically in recent years, which has attracted many new players to the consumer DNA test market.

Most consumer DNA test companies use a method of gene reading that evaluates snapshots of a person’s DNA data to discover his or her genetic ancestry and potential disease-prone genes. This method, which goes by the name of genotyping, gives an incomplete picture of a person’s DNA. Medical laboratories, which are more trusted by physicians, use sequencing to assess a person’s DNA. Sequencing costs more to execute, but it gives health practitioners a more complete view of a person’s genes. Prominent healthcare advocates claim that no licensed doctor who has malpractice insurance will consider consumer genetic test results as a basis for a clinical diagnosis or treatment.

Applications for Your DNA Data in the Wellness Sector

Your DNA data has more value to businesses than you think. Despite giving an incomplete picture of a person’s genetic makeup, consumer gene test results are being used to market products and services for a variety of wellness-related businesses.

For instance, skincare companies found that skin aging is more influenced by a person’s genes than by his or her lifestyle or environment. Premium skincare company Geneu now offers personalized creams and serums based on a person’s DNA test results.

Andrew Steele, who is a former Olympic athlete, started a company that uses a person’s DNA data to deliver customized fitness training. He believes that DNA test results give insight into the optimal diet and exercise choices for serious athletes.

It’s widely known that your genes can raise or lower your risk of baldness. Specific information about your baldness genes can become important to companies that specialize in baldness early detection and treatment options. These firms could use your DNA test results to recommend ideal diet, exercise, and stress management protocols for your condition.

While there is no scientific evidence that links genes to personality traits, certain dating services aim to mix anecdotal evidence with the science of DNA tests to match singles with more compatible mates. Gene Partner offers its clients gene tests and determines their gene compatibility with other members. The company claims that this form of matchmaking results in higher success rates for long-term relationships.

Making Your DNA Test Kit Data Available for Medical Research

Developing a degenerative disease is a fear that many people harbor as they grow older. This concern equates to a veritable jackpot for consumer gene testing companies. The 23andMe DNA library is filled with millions of DNA samples, and about 80 percent of the company’s clients allow their DNA data to be used for biomedical research. 23andMe’s head scientist Richard Scheller said that he thought that it was genius that people were paying the company to build its database to promote scientific discoveries.

Cancer is a common disease that medical research companies seek to stop via gene-based treatments. Actress Angelina Jolie was at the center of one of the most well-known cases for gene-based preventative treatments. Jolie reportedly received DNA test results that showed the presence of the breast cancer gene BRCA1. She made the drastic decision to undergo a double mastectomy. This is not an action to take based on an incomplete at-home DNA test. Alzheimer’s disease, Parkinson’s disease, and diabetes are some other ailments that modern biomedical researchers hope to tackle via gene testing.

Many people have completely altruistic reasons for donating their DNA test results to biomedical researchers through consumer gene test companies. However, some medical research is controversial and unethical at best. Some of today’s medical scientists push moral boundaries to experiment with gene-editing methods and technologies. Despite public outcry, Chinese scientist He Jiankui used a gene-editing technique to change two human embryos to create twin girls. The father of the genetically modified set of twins is HIV positive, but He Jiankui removed the gene that would allow HIV to infect the bodies of the girls. This gene-editing technique is called Clusters of Regularly Interspaced Short Palindromic Repeats or CRISPR for short. The implications of CRISPR are far reaching. Scientists could use gene surgery on human embryos to create designer babies whose offspring will permanently impact the world’s gene pool for good or evil.

Big Pharma Set Sights on Your DNA Test Kit Data

If you believe that major pharmaceutical companies may be interested in your DNA data, 23andMe won’t leave you in suspense for long. The company’s CEO and co-founder just signed a deal in July 2018 with GlaxoSmithKline, which is now known as GSK. According to GSK executives, 23andMe will have a big impact on the pharmaceutical company’s drug discovery efforts. 23andMe received $300 million from GSK to seal the deal, and it will share in costs and profits equally with GSK for future drug development.

Through its partnership with 23andMe, GSK will bring its drugs to market faster and with fewer expenses. For instance, the company is working on a drug to counter Parkinson’s disease, which appears prominently in people who carry a variant of the LRRK2 gene. Since 23andMe has a database of clients who have the LRRK2 gene and have agreed to be contacted for clinical trials, GSK will simply contact those people to begin its drug trials.

The main issue is still accuracy. The genotyping gene-reading method that 23andMe uses still presents only an incomplete picture of a person’s genetic makeup. Wouldn’t an incomplete gene test produce flawed drug trials? The pharmaceutical industry has a history of producing drugs that have many side effects. When lots of people experience serious side effects from the companies’ drugs, the government fines these drug makers. Since most pharmaceutical companies have deep pockets, they pay the fines without batting an eye and carry on their activities as if nothing happened.

Many people know that drugs are a Band-aid solution that only masks symptoms of diseases. They aren’t traditionally designed to cure any ailments, and GSK’s leadership didn’t indicate that its partnership with 23andMe would yield different results in this area.

Insurance Companies Stakes Claim on DNA Test Kit Data

The Genetic Information Non-discrimination Act of 2008 prohibits insurance companies from denying initial or renewed healthcare policies or raising policy premiums for people based upon their genetic information. However, this federal law doesn’t apply to life insurance and long-term care policies. Having access to your DNA data allows an insurance company to reduce its risk of insuring you by changing pricing and terms for life and long-term care insurance products. This would more than likely result in higher premiums for you if you carry genes for illnesses such as late-onset Alzheimer’s disease or Parkinson’s disease. You would be penalized for ailments that you may not ever develop.

Conclusion

For many people, DNA testing comes down to trust. Your DNA contains some of the most intimate details about your personality, health, and family history. Once you’ve given your DNA data away, you can’t keep that part of yourself private anymore. To lower the risk of your DNA data ending up in the wrong hands, make sure that you only take part in DNA testing with companies that you trust.