Since James Watson and Francis Crick unlocked they mystery of DNA’s double-stranded helix in the early 1950’s, human understanding of genetics has grown by leaps and bounds. Less than 50 years after winning the Nobel Prize for their work, the ideas Crick and Watson put forth lead to the completion of the Human Genome Project (in 2003), giving scientists a remarkably clear picture of how humanity is constructed.
Now, 15-years later, technology has advanced to the point where anyone can swab the inside of their mouths and, for a nominal fee, gain access to their own genetic code. But to paraphrase renowned 20th century mathematician Ian Malcolm, just because we can doesn’t necessarily mean we should, at least not without first performing our due diligence.
Before you jump on the DNA bandwagon, it’s important to stop and think about how your information will be used, and what control you have over your own DNA once you send in a sample. For example, is your DNA test kept private, or can it be sold to third parties? How secure is your data from hackers? Can an insurance company gain access? How about law enforcement? Are you able to have the sample destroyed?
These are just a few of the questions people should be asking before they allow a third party access to their very essence. Luckily, the following companies clearly answer these privacy concerns, and more, on their websites. So while it’s up to you to research which test is right for you, the following list will give you a nice head start.
Based in Mountain View CA, 23andMe takes its name from the 23 pairs of chromosomes found in a typical human cell. And like our previous entry, it offers a detailed genetic ancestry test which can trace your roots back to a 150 different geographic regions. But the company also offers a variety of reports that examine your health – including your risk for certain diseases, your carrier status for inherited conditions, and an analysis of other genetic traits.
In order to keep your information private, 23andMe assigns a randomized customer identification number to your DNA sample and stores it in a “physically separate computing environment” from your personal information (name, credit card, etc.). You also control whether or not your saliva sample is placed in storage after the test is conducted, and whether your account is visible to other 23andMe members. The company will not share your results with third parties without your consent, including insurance companies or employers. It will also not share your information with the government unless legally compelled to do so with a valid subpoena, warrant or order.
Our next entry is Helix, which also offers genealogical and health-related insights from genetic testing. However, what separates this service from competitors is the fact that it offers an “entire marketplace of products” of customized DNA research via third party vendors. As a result, users are able to “unlock more DNA,” which results in 100-times more data than your average at-home test. Helix and its partners then use this information to provide “more actionable insights,” such as how you can best optimize your workouts to lose weight, or “which wines taste best on [your] palate.”
All of Helix’s third-party vendors are required to “meet the standards that [Helix] established when it comes to privacy, security, control, and experience.” The company also claims it will not “sell or share your DNA data without your permission.” That said, according to the Helix website, each partner sets its own policies for its products, so it’s up to users to do their own research before purchasing.
And as far as legal matters are concerned, “Helix evaluates law enforcement and other legal requests for data on a case-by-case basis.” If a request from law enforcement is made, the company’s policy is to notify the user “unless [they] are legally prohibited from doing so.”
Ancestry.com, the world’s largest for-profit genealogy company, turned researching family histories into a billion-dollar business. For its next act, the company is betting that consumers will be as interested in genetics as they are in genealogy. That’s why it’s now offering a detailed DNA test capable of tracing your genetic ancestry to “over 350 regions—sometimes down to a city.” Based on the results, the company is also able to offer possible ancestral migration patterns, DNA matches to living relatives, and an estimate of your potential ethnic makeup.
As far as security is concerned, Ancestry.com uses “industry standard security practices to store your DNA sample, your DNA test results, and other personal data you provide.” As an added precaution, your DNA information is stored “without your name or other common identifying information.” You also retain ownership of your DNA data, and can chose to have it deleted at any time.
Last but not least, we have Embark, a company that uses one of humanity’s greatest achievements to offer insights on man’s best friend. The test looks at 200,000 genetic markers to determine your dog’s breed, traits, and other useful information. More than a simple vanity project for purebred breeders, Embark allows everyday pet owners information on nearly 165 genetic health conditions, so that preventive measures can be taken. This could lead to smaller vet bills down the road, and more importantly, a longer, happier life for your four-legged friend.
And if your dog’s genetic privacy is something you value, you’ll be happy to know that Embark will never share identifying information without your explicit permission (although the dog’s consent isn’t mentioned). And while the company does share aggregated, non-identifying information for research purposes, you are able to opt out.
Based on the popularity of genetic testing kits, there’s no shortage of people interested in using DNA to gain insights into their health and family history. In fact, the consumer genetic testing market is expected to grow into a $340 million industry by 2022. But as mentioned above, trusting a third party with your DNA should not be a matter of faith. It’s important to understand how your DNA will be used, and who will have access. And while it’s ultimately up to you to decide what service to use, if any, the companies listed above have clearly stated their commitment to maintaining the privacy of their users and remaining transparent about how they use your DNA.
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