Risks of Home DNA Tests
May 10, 2019

DNA Test Privacy RisksAt Home DNA tests (e.g. 23andMe and AncestryDNA) are all the rage.  DNA test kits were gift of choice in many families this past Christmas.  In fact, it is reported that 1,500,000 of the take home DNA kits were sold on Black Friday weekend alone.  While the idea of learning your ancestral roots may be intriguing, utilizing a DNA home test is not without risks.

What Are the Risks of DNA Home Tests?

The inherent risk is significant enough that the FTC issued a warning earlier this year cautioning consumers about the privacy (or lack of privacy) implications of test kit results.  The FTC cautions potential users to carefully investigate the privacy policies offered by the different company’s and advises buyers not to automatically accept the company’s security settings. And the risks involved with at home DNA testing results go beyond privacy issues so, before signing up, potential users need to be sure they are prepared for what the tests may reveal and the fall out of such revelations.

Before submitting your DNA to a company, as cautioned by the FTC, prospective users should consider the privacy risks.  What will happen to your test results?  Are the results forwarded only to you and then destroyed or are they shared with other organizations?  Most companies work diligently to protect your information but the companies are subject to hackers.   Additionally, companies can and actually do sell your information to third parties. Pharmaceutical Companies are reported buyers and one large pharmaceutical company has recently acquired a $30 million stake in one of the popular DNA test companies.

It is true that DNA companies cannot share your test results without your consent.  Interestingly, reports show that 80% of users actually consent to such sales. This high consent rate may be due to the complexity of the agreements signed by users.  Or, perhaps users simply do not realize what they are agreeing to or perhaps they truly do not care if their results are shared or sold to third parties.  Whatever the reason, users should understand the policy of the DNA company they choose so as not to be unpleasantly surprised when they learn results have been shared.

Understand too that even if you read the agreement carefully and make clear that you do not consent to the sale of or distribution of your test results to, there is still a possibility that law enforcement and the Federal government can pressure genetic testing companies into sharing your DNA results. Companies will defend customers and try to protect a user’s privacy but subpoena power is available to law enforcement and this is clearly an area of law that is still in the developing stages.

Keep in mind, too, that when you provide your genetic information to a DNA testing company, you are not only providing information about yourself but also about your relatives.  And when your relatives (even those very distantly related) provide information about themselves, they are providing information about you.

These privacy issues can be managed if the consumer is aware of the potential problems and enters into agreements knowingly.  However, privacy concerns are only one consideration.  These take home tests provide information to the user and the user’s family that can have far reaching implications and significant unexpected impacts.

Important Things to Know About DNA Tests

DNA take home test kits can be used to receive information about “disease risk” and/or to learn about ancestral background. Whatever the purpose, users must remember that DNA is an extremely complicated set of genes that cannot be simplified into one test. The testing can be inaccurate. The ancestral tests, for example, are working with probabilities not certainties. Different company tests get different results. One article reports an individual who took 9 tests and received 6 different sets of results.

It may have little impact on a person’s existence to learn that they are actually German when for years they believed they were of Irish descent but the tests also provide information about siblings of whom the user was previously unaware or the test may reveal facts about an individual’s parents that can have a devastating impact on an individual’s identity. Discovering unanticipated information is not necessarily a good thing. To go through life secure in the fact that you are part your father and part your mother only to learn that only half of that belief is true can be life ruining.

Over the past several years, support groups have developed to help people adjust to and deal with the disappointment and anger that flows from these “DNA surprises”. The DNA companies have warnings about learning unexpected information about their heritage and background. AncestryDNA has representatives specially trained to speak to users who learn unsettling facts about their heritage. The results of these tests can be entertaining and enlightening – just understand that they can have far reaching implications.

The results obtained from the “disease risk testing” can have much more significant consequences. To receive information about a possible genetic mutation or high risk of disease factor without genetic counseling can be in some cases catastrophic. If you test for these types of results, be sure you know what kind of information you will receive and be sure that you and your family are prepared to receive and deal with the information.

DNA Test Privacy

Privacy is again a concern with the “disease risk” testing. The Genetic Information Act of 2008 prohibits health insurance companies from penalizing people for high-risk genetic markers. However, life insurance companies are not subject to the Act and the results could be used to increase premiums or perhaps to deny coverage for individuals with high risk markers.

Another, and perhaps the biggest concern, about the information readily available through the simple to do, inexpensive DNA tests, impacts the world of donor conceived children. Anonymity is the cornerstone of a donor’s willingness to donate and a recipient’s willingness to participate in donor programs. Yet, the ability to remain anonymous is quickly becoming a thing of the past.

Donor conceived children and their parents are beginning to use DNA data-bases to learn the identity of anonymous donors. CBS News recently reported a story about the mother of a child conceived with the use of donated sperm who learned of an immediate relative of the donor through the use of a DNA test kit. She reached out to the relative and received a “cease and desist” letter from the donor bank that had promised donor anonymity. She was warned that the sperm bank could seek up to $20,000.00 in liquidated damages as a result of her reaching out to a relative of the donor who had, in fact, indicated that he was willing to receive contacts.

In addition, and perhaps more significantly, the bank reclaimed four additional vials of donor’s sperm that the recipient had purchased with the intent of having additional children who would be her child’s genetic sibling. The recipient had signed a contract agreeing that she would not attempt to contact the donor, and the fact that she did not intentionally violate the contract did not mitigate the situation. Experts contacted as part of the CBS story opined that given the ease of obtaining DNA results and the increased interest in doing so may mean that “contact may simply be unavoidable” and that despite best efforts it is becoming impossible to promise anonymity. This inability to assure that a donor will remain anonymous may very well impact on the number of individuals willing to participate in donor programs.

Participants need to research the companies they choose to do the test and read and understand the contracts they sign; they need to be prepared for unexpected results and recognize that genetic testing is a complicated and evolving field. Handled in this manner, the tests can be fun, entertaining and informative.

Contact Us (Harrisburg)

Contact Us