You would never think to hand out copies of your Social Security card or to keep a list of your computer passwords on a Post-it note on the wall of your work cubicle. You wouldn’t walk away from your wallet or cell phone in a bus station or put your purse down in a shopping mall food court. And yet, millions of Americans are spitting in test tubes and giving Big Brother businesses full access to their genetic code. For $99 you get a commemorative “genealogical report” and lifetime storage of your genome in some corporately held communal freezer. O, the humanity!
Jennifer King, director of consumer privacy at Stanford Law School’s Center for Internet and Society states, “The key thing about your genetic data is, it is uniquely yours. It identifies you, so if you are going to entrust it to a company, you should try to understand what the consequences are.”
While many of the big players in the DNA-testing world insist that protecting their customer’s privacy is their highest priority, I would warn that before you or a loved one forks over a Benjamin to let some hustler hijack your heredity—there are some risks and some fine print you might want to take into consideration.
Databases Can Be Hacked
DNA Testing companies have spent countless hours and invested in countless millions corroborating with legislators and lawyers before drawing up the most air-tight privacy policies possible to ensure your human rights and peace of mind. But buyer beware! All the signatures and privacy policies in the world cannot make a company’s network impervious to nefarious third-party hackers—heisters whose Hancock’s are nowhere to be found on all the good-faith contracts sitting somewhere in your saved files.
Shockingly, while many Americans are adamantly opposed to invasive Big Brother technology such as cameras in smart TVs, Google logging all of our search engine requests, the monitoring and flagging of our text messages, and the censoring and demonetizing of You Tube channels (to name just a few) these same consumers, by and large, readily give consent to these genetic testing companies to share their genetic information with third parties. Marcy Darnovsky, executive director at the Center for Genetics and Society says, “This data is shared with and passes through many partners,” and in her opinion, “No matter what the testing companies say, they can’t ensure what those partners are doing with your DNA.”
While genetic testing companies may hold fast to their promise to not share your information with third parties without your consent, this does not stop insurance companies from asking you whether you have had genetic testing done. If you have, and you answer, “Yes,” you may be subject to a bevy of questions about your and your family’s health history and, in some cases, declining to provide the insurance companies with the information they are requesting will equate to fraud. This could result in legal action against you or your family as well as being disqualified from being eligible to receive insurance.
If you are the type of person who feels violated knowing that Facebook owns the copyright to all your selfies and personal photos—multiply that injustice by about a million when you give these same corporations access to your genetic code. Once these genetic testing companies and third parties have access to this information, they also have a huge puzzle piece of the genome of your mother, father, grandma, grandpa, aunt, uncle, cousins, brothers, sisters, sons, and daughters. This means your own family can become collateral damage should anyone ever wish to use your DNA or genetic code information for perverse purposes
Genetic testing is still somewhat of a new science. All the risks, implications, and unintended consequences have not been fully explored or discovered. Because of this, there is currently not much legislation or regulation yet written, meaning there are potentially dozens of unknown loopholes in which corporations, third parties, insurance companies, medical facilities, and law enforcement can slip through in order to do their bidding without being held accountable.
Similarly, some genetic testing companies have air-tight binding arbitration clauses baked into their client contract. This taken directly from the 23andMe user agreement:
“Any Disputes shall be resolved by final and binding arbitration under the rules and auspices of the American Arbitration Association, to be held in San Francisco, California, in English, with a written decision stating legal reasoning issued by the arbitrator(s) at either party’s request, and with arbitration costs and reasonable documented attorneys’ costs of both parties to be borne by the party that ultimately loses.”
In other words, according to consumer protection lawyer Joel Winston, “It’s a threat in advance. In one sentence, 23andMe destroys access to the normal rule of law, forcibly imposes mandatory arbitration, and, issues a clear threat—if the individual loses in arbitration, they must pay for 23andMe’s lawyers! Insane.”
Changing Corporate Policies
As the old adage goes, “Here today, gone tomorrow!” Change is inevitable. At any time, a company’s situation, privacy statement, or contract can change. A bankruptcy, a new CEO, medical or technological advances, changes to state and federal law—any number of things can nullify a contract. Just because a genetic testing company gives you a choice today whether you want your information stored, destroyed, or shared with third parties, does not mean you will have those same choices tomorrow.
Law Enforcement Access
Law enforcement is well aware of the fact that over 26 million Americans have had their DNA tested since 2018. Don’t think that an organization with access to your dental records and your fingerprints don’t want to get their mitts on the holy grail of all DNA evidence—your genetic code. Requests made by the courts or law enforcement are already occurring now, and they can also legally be done under subpoena. These requests can also come from the federal government, including the State Department and the U.S. Military. And please do not take the naïve stance that says, “I’ve got nothing to hide, I’m not a criminal.” A day is coming when “criminals” will not be the only thing the U.S. government and military are hunting down.
No Cloning Clauses
Now we are treading upon the more conspiratorial waters. To date, there are not any cloning clauses included within genetic testing contracts. In the interest of not wanting to be duped into some philosophical “silence gives consent” loophole, the day will soon come when the public may demand that this qualification be made clear. And lest you think this sci-fi supposition is riding off the rails, Michael Quander of WUSA9, in his article entitled, “What are Genetic Testing Companies Doing With Your DNA,” recalls a story of Henrietta Lacks, a poverty-stricken African American mother-of-five who, in 1951, went to a hospital with concerns over vaginal bleeding. According to Quander,
“Lacks was an underprivileged tobacco farmer who had her cells taken without consent in the 1950s. They were the first immortal human cells that could be grown in a test tube. Lacks’ cells were crucial in many medical breakthroughs, such as the polio vaccine, in vitro fertilization, cloning, gene mapping, and more.”
The three things I want you to take from this anecdote are: 1951, without consent, and cloning. This was nearly 70 years ago, folks…and don’t think the demand for genetic code data is less in demand now than it was back then.
Please prayerfully consider genetic testing before sending your DNA through the mail to a corporate entity. There are currently home DNA tests available on the market. While some of the home testing kits might not have as many bells or whistles as the corporations have to offer, with time and technology, I am sure more advanced and reliable home DNA kits will be in demand and available. If you do decide to send your spit off to Ancestry, Helix, 23andMe, or some other genetic testing company, take the time to not only read, but to understand, all of the preliminary documentation and know what you are signing, because, as Gizmodo writer Kristen V. Brown warns, “If you do not read those documents—and many don’t—you’re missing the fine print that explains how your DNA can be used, misused, leaked, hacked, sold, and commodified without your knowledge or deliberate consent.”
Do your research and be safe!