I was contacted by a genealogy researcher who offered me a free DNA test kit. What should I do?
I was told that I will help clear my deceased parent as the father or mother of a child born out of wedlock.
A growing number of people are being contacted by “genealogy consultants” who claim to be engaged in research to help identify the biological relatives of a person who does not know his or her parents or siblings. They ask you to willingly hand over your DNA to a company for analysis in exchange for learning about your ancestry for free. You need to carefully consider the risks and what can go wrong. You may not know what you are signing up for when you spit in a tube and answer questions about your heritage. The genealogy consultant is likely being paid to collect your DNA and may have an incentive to provide limited or misleading information about the purpose of the research and testing. The consultant could be contacting several of your relatives at the same time or imply that if you don’t provide a DNA sample, then your information will be just as easily obtained from another family member. The person for whom the research is being done may also show up at your door-step unannounced, claiming to be a relative, or a long-lost heir. Before you agree to hand over your personal and private genetic information to a company because a stranger asks you to do so, ask yourself whether you really know who is making the request and why, how your genetic information can be used, and if you are putting at risk the genetic privacy of your children.
I gave my DNA away. Can I get it back?
Just recently, I spit in a tube and sent my saliva off in a test-kit for DNA analysis, along with a lengthy questionnaire about my health and family history.
You are not alone. Once a person realizes the value of the information that they have given up, he or she may want to regain control of this information. To start, you should read the privacy policies of the company that you sent your DNA sample to for testing. These click-through terms and conditions offer very little meaningful protection. Fortunately, most of the DNA ancestry companies operate on the basis that a consumer can withdraw consent to testing and use of their genetic information at any time. They don’t make it easy to cancel your consent, but it is your DNA. Get it back and keep it private.
What information is contained in my DNA?
I was told the only information in my DNA is my ancestry identity. Seems pretty harmless.
Think of your DNA as a coded, probabilistic future diary of who you are and who you will become. It is your genetic blueprint. The DNA technology used to create ancestry information contains a vast array of incredibly personal medical information from over 700,000 locations on the human genome. The information contained within your DNA has profound implications for your privacy and for your children’s privacy. The potential for genetics to reveal disease, longevity, procreation, mental health, substance abuse, and behavior is real. Because of the incredible power of this DNA technology, much more is revealed about you and your children then mere ancestry information. This information can be used in ways that you never intended or anticipated.
Won't my DNA only be used for the limited purpose of finding my relatives?
I was given a test kit for free or as a gift to help with completing the family tree.
If someone told you to post your social security number, date of birth, and address on the Internet in exchange for some trinkets of information, would you? Of course not, because you understand the risk that your financial information, once public, is going to be used for purposes you never intended. So why would you put your genetic blueprint out there on the Internet? What is poorly understood is the amount of information your ancestry DNA profile reveals about you and your children.
Why does the DNA testing company want to keep my DNA sample and my genetic information?
I am concerned about what a private company will do with my genetic information.
Precisely because of the vast amount of information contained in your ancestry DNA profile, (called a GED profile) ancestry DNA companies see the future not in test kits, but in DNA as a much-in-demand commodity to create products in-house or to market large pharma companies and others, seeking to profit from unlocking the secrets of the human genome. When a consumer sends in a test kit to find ancestors, they are often unwittingly providing these companies with critical information, for example, about longevity – which is a key area of research for private companies. Databanks of DNA linked with ancestry and health information are then used to develop new genome-based products and services. You may have a genetic variant that contributes to a very profitable drug or product, but although it’s your DNA, you will never share in the discovery.
Is my DNA and genetic information shared with other companies?
Can the police access my DNA and genetic information once I send it to a company for testing?
I was told my DNA and genetic information cannot be searched without a warrant.
Once your DNA is in a company’s databank, you have effectively placed yourself and your family under genetic surveillance by the government. Today the crimes being investigated through genealogy are very serious crimes against a person, but as the techniques become cheaper and faster, genealogy searching will continue to expand in scope to include property crimes, non-violent offenses, and quality of life crimes. At the same time, the increased sensitivity of DNA testing – which can detect minute amounts of your shed DNA innocently left behind in a hotel room, rental car, or any other item you come into contact within your daily activities – creates a real risk that you or your family could wrongly be targeted during an investigation. Just ask the man who was transported in an ambulance with an oxygen sensor clipped to his finger. The same ambulance later responded to a murder scene and transported the victim to the hospital. The same oxygen sensor was clipped to the victim’s finger. Guess whose DNA ended up on her fingernail clippings and was charged with murder? Fortunately, this man was able to prove his alibi, but not everyone will be so lucky. Do you really want to subject your children to this risk?
Do these DNA companies just sell test kits?
I was told that no one would be interested in my ancestry information except my relatives.
Although 2019 has been another boom year for direct-to-consumer genetic testing for ancestry and medical purposes, the business model of these testing companies is not test kits. Instead, the model is collecting, retaining, and distributing your most intimate, personal data. The number of people who have submitted their DNA samples for genetic testing to obtain information about their health and ancestry is staggering. Some estimates exceed 20 million people. It should come as no surprise that a company like Google, whose business is to collect information about people that is used to sell targeted advertising, is closely linked to the business of ancestry databanks and longevity-related products. Ancestry databanks are the first applications to draw in consumers to submit DNA samples, along with a great deal of other information that can be correlated to their genetic information, repackaged, and sold by these private companies. In the genetic era of medicine, controlling access to these databases places an enormous amount of power and responsibility on private companies whose sole purpose is to generate wealth for their shareholders.
There are laws to protect my DNA privacy, right?
I’m worried about getting disability insurance, or someone finding out that my DNA shows I have a greater chance of developing dementia, cancer, or a host of other serious medical conditions.
Unfortunately, the existing patchwork of state and federal laws fails to provide comprehensive regulation and protection for how DNA or genetic information should be collected, retained, and shared in the genetic era. Because of the vast potential for misuse of DNA, there must exist thoughtful, robust, and comprehensive regulation of public and private DNA databanks. There is a rapidly growing problem about the unregulated collection, retention, and sharing of DNA of innocent people in public and private databanks at the dawn of the DNA era.