Take Home DNA tests – Fun or Folly – Part 2
May 10, 2019

DNA Test RisksDNA 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.

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.

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