Every time you sign up for one of those at-home DNA tests, you’re potentially putting your data in the hands of a company who turns around and sells it for a profit. But, there’s another option: monetize your genomic data and direct those profits to your bank account instead. At DNAGeek, we aim to inform you of all your options, including the one to put your raw data to work for you, instead of for other companies.
There are no shortages of companies selling at-home DNA kits to the general public. It’s an attractive premise: you get to read the analysis of your DNA, discover your ancestry and potentially identify medical markers that exist within your genes. However, some of these companies also sell the information in your DNA to larger companies who use the results for research purposes. One such company is the widely known 23andMe, who sold a $300 million stake in the company to GlaxoSmithKline in 2018.
This poses the question: what if you could, in turn, use your information to make money for yourself? The good news is that there are are a few startups that intend to help you do just that. Taking the reins into your own hands can prove to be a profitable venture, especially if there’s something that researchers find unique about your data. Even healthy people that show no markers or carrier risks are needed for studies, so it’s not just for people who have illnesses or the potential to carry and pass these diseases or disorders on.
What Information Is Present in Your DNA?
Your DNA holds all of the information about what makes you, uniquely you. While approximately 99.9% of DNA is the same from person to person, that 0.1% is what sets you apart from the rest of the population in the world. It contains information about your ancestry, your health and even potential susceptibilities.
Depending on how deep the analysis runs, at-home DNA tests can identify regions that your ancestors lived in dating back thousands of years and several generations. Each company has a different number of regions that they can identify so the results you receive may be different with each one. It’s all a matter of which at-home DNA test you take.
It’s not all about ancestry, though it does play a major part in why people decide to take the tests in the first place. Other DNA tests piggyback the ancestry with health markers that can identify specific risks such as those associated with dementia including Alzheimer’s, breast cancer and leukemia to name a few.
Some DNA tests can even help identify food allergies and sensitivities, medication sensitivities and what type of workout is best suited to help you lose weight. There are many possibilities beyond these factors as well. As more research is carried out, there’s a high likelihood that DNA companies will continue to tailor tests to specific markets.
How Is Your DNA Information Beneficial to Researchers?
With all of the information that your DNA contains, it’s only natural that researchers would want to use the findings to develop better product lines, more specifically prescription and over-the-counter drugs.
Other companies use the information contained within DNA to do further research into diseases and disorders such as lupus and asthma, or even to study how a person’s genes relate to their lifespan.
Having access to this information helps researchers learn more about diseases and how they present, and also ascertain if there’s a way that they can actually detect and prevent the diseases earlier. There’s also the potential to observe the way the diseases function and the effect they have on your overall health.
Additionally, the genomic data helps pharmaceutical companies develop more effective medications to treat diseases and disorders, especially if researchers can pinpoint specific markers in DNA.
Can Companies Share Your DNA Without Your Consent?
This is a tricky question because each company’s fine print is a bit different and it’s up to you as the consumer to read the consent document that’s provided when you submit your sample for analysis. AncestryDNA and 23andMe are two companies that keep your data until you ask them not to.
When you use 23andMe, the company asks upfront whether you want your saliva sample stored or tossed out, but it doesn’t ask about your genetic data. If you opt to have your saliva stored, the company can hold it for any period of time ranging between 1 and 10 years. You can always change your mind later by filling out a form to request your account be closed.
AncestryDNA allows customers to delete their DNA data right on their website. Requests can take up to 30 days to process, but that may not be enough to delete it entirely. For example, on their consent form that customers acknowledge when they sign up, the genetic data can be used for research purposes. This means that if a customer’s DNA information is already part of a study, it will continue to be until the research is complete. Ancestry will not, however, make that DNA available for new or upcoming research programs.
How Does Selling Your DNA Work?
Selling your DNA isn’t as difficult as it may sound, and it’s not much different than donating blood. Where your blood serves to save lives when people need a transplant, your raw genomic data serves to help companies carry out scientific research that aims to save lives as well, just on a broader scale.
Should you choose to sell your DNA, there are a few different routes you can take. You can opt to complete an at-home test through one of the many brands that offer the service, or you can sign up directly with a company whose sole purpose is to eliminate the middleman.
Companies That Let You Make Money Off Your DNA
If you’re considering selling your DNA profile for research purposes, there are several startups and established companies that can help you get started. Each one has its own set of guidelines, but the process is nearly identical. First, you have your DNA analysis done at your cost, and you agree to make the information readily available to companies that might want to use it in a study by signing a consent form.
Let’s take a look at a few companies where you could potentially monetize your raw data.
LunaDNA takes the existing data that you’ve already had analyzed through one of the at-home testing companies, there is no need to pay for extra testing. You’ll upload the aggregated data, which LunaDNA then encrypts and removes all identification markers from to protect your privacy, going so far as to employ HIPAA practices. The data is never made public and the choice to share the data is always 100 percent yours.
Once your DNA is in the system, researchers who have paid to access the database may choose your profile to include as part of a study. If this happens, you’ll earn shares based on the data that you opt to share. These shares then receive dividends as researchers complete the studies your DNA is involved in. These shares are yours as long as you have your data in the system, and should you choose to remove it, your shares will revert back to the company.
At first glance, Nebula Genomics is like the other at-home DNA sequencing companies, as they offer a kit for you to provide a saliva sample. However, unlike other companies, Nebula Genomics chooses to analyze all of your DNA instead of just parts of it. This means in order to participate in the research opportunities, you have to pay for the kit, which as of February 2019 costs $150.
However, there is another option if you don’t want to pay for the testing up front. You can earn credits by choosing to fill out a survey, answering questions about your health. In the future, you can potentially match up with research companies that will then cover the costs of clinical-grade whole genome sequencing. As of February 2019, the only option is to earn credits and buy Nebula’s low-pass sequencing kit which does not cover disease risks, adverse medication responses or carrier status.
Regardless of which option you choose, you’ll have full access to your data. This means you can opt to keep it public for research studies and earn money by doing so. You can also choose to remove your data from the system and keep it for your own knowledge or upload with other companies.
DNASimple takes another approach to the DNA sequencing game that quite literally, keeps it simple. Unlike other companies, you don’t have to provide them with a saliva sample. Instead, when you match with a particular study that wants to use your genetic data, you’ll receive a collection kit from DNASimple, which you do at home and then send back in the postage-paid envelope. The saliva is only used for the particular study that you matched to and agreed to participate in, not in multiple studies. This means you’ll have to complete the process each time you match to and opt to participate in one.
As of February 2019, the compensation rate is $50 per study, though there will likely be increases in the future. But, as of this date, you don’t have to pay anything out of pocket to have your DNA analyzed, either. All of your information, including your profile information and responses to survey questions, is kept private, even from DNASimple employees. The company complies with HIPAA laws and is available for customers in the United States and Canada.
If you’re looking for an entirely different way to make money with your DNA, you’ll certainly find it with EncrypGen. Instead of paying in cash, researchers pay with DNA tokens, which is a type of cryptocurrency that works similarly to Bitcoins but they are not be confused with Bitcoins. Participants also receive DNA tokens for their genetic data. The value of the tokens will increase or decrease per the market value, much like other types of cryptocurrency. The current value and changes are available on the website for full transparency. The entire site is listed as a marketplace where researchers and participants exchange services for tokens.
EncrypGen gives users the option to either upload their existing data or purchase a kit on the company’s website. The at-home tests range from $99 to $250 per kit, depending on which one the buyer chooses. They can also purchase with DNA tokens and save money on each kit. Sensitive information is removed from the user’s profile to protect the participant’s privacy.
Selling DNA isn’t for everyone, but if you see the opportunity for providing researchers with beneficial information that can help foster progress in science, you really have nothing to lose. Do your research before signing up with a company to see whether it’s a good fit for you.