Are DNA Testing Companies Selling My Genetic Information?
Probably not, but read the terms if you’re concerned about your privacy
on April 11, 2018
Updated on July 27, 2022
New consumer-based DNA tests are sweeping the country, with Credence Research projecting growth from $70 million in 2015 to $340 million by 2022. Inexpensive and fairly easy to use, many tests merely ask you to spit in a tube, seal it and send it off. In return, depending on the service, they may send: an ancestral make-up, others of similar DNA in the system, a health analysis and history based on genetic data, and some even go so far as to suggest a wine pairing to your ancestral palate.
As the trend spread, so too have concerns about privacy issues. Most of the companies have huge terms and conditions pages that allow companies to sell your DNA to third parties for research, or publish your genetic make-up for others to see. But as Blaine Bettinger, an intellectual property attorney in Syracuse, points out, they only have as much power as you choose to give them.
“There is nothing wrong with having privacy concerns,” he says. “These companies are allowing the opt-in, opt-out procedures to allow any of your privacy concerns to be covered and still enjoy the product. The thing I will always say is, ‘Make sure to read the terms of service.’ If you are sending your DNA away, you want to understand what rights you have and what you are giving up when you send away these samples.”
Bettinger looks at these concerns as on a data privacy spectrum—some fall on the extremely conscious side, while others aren’t as concerned. “What is nice about these testing companies is that they allow you to test along that continuum,” he says.
Many of the companies have an opt-in procedure for each of its offerings. If you would rather not receive medical data, you may opt-in or out of being included in that testing. Many also allow you to use a pseudonym for a user name, if your personal identity is your concern. Some allow you to request that your sample and results are destroyed after testing, rather than being stored in their system. Some may engage in third-party research with the DNA personal data it collects, and may ask you to opt-in or -out of it.
“From a legal standpoint,” Bettinger says, “out of most of these companies, you’re not getting anything that is medically informative. For the select few that do offer medical testing, there are legal implications only so far as the companies that have a right to ask for that information.”
The Genetic Information Non-discrimination Act (GINA) says employers and health insurers aren’t allowed to ask for genetic information, but not everyone is prevented from doing so. Life insurers and long-term care insurers are not covered under that law. “So the question will become whether you will be required to answer the question, ‘Have you ever had genetic testing done?’ with a ‘yes,’” Bettinger says. “These are unanswered questions; no one has gone to court to enforce an insurance claim being denied because they didn’t disclose a 23andMe testing, so we are unsure as to what the legal ramifications of this interaction will be.”
There are a lot of conspiracy theories surrounding these home DNA tests, and Bettinger addresses one in particular: “No one will be able to clone you. Within all of these testing companies, one only provides a tiny fraction of our overall DNA anyway. None of the companies are doing whole genome testing, so cloning or seeding your DNA at a crime scene simply isn’t possible.”
The value for the companies isn’t in the DNA of an individual, Bettinger says. “The only value that these companies can use with these samples is in the aggregate—having the thousands or hundreds of thousands or sometimes even millions of DNA profiles to come to any scientific conclusions. … They need large databases to do this type of research.”
If one doesn’t understand the terms of service or the informed consent, or if you feel your rights have been violated, contact a reputable and experienced attorney. For more information on privacy laws and DNA data, see our intellectual property overview.