One of the hot holiday gifts in 2017 was a DNA home test kit. Ancestry.com reportedly sold 1.5 million of these items during the Black Friday weekend at a reduced $59 each. Rival 23andMe countered with their own discounts. TV ads for the simple-to-use products were everywhere. The commotion prompted US Senator Chuck Schumer to throw out some caveats about the privacy issues surrounding these tests.
There are two questions to weigh before you pay $49 or more for a kit. First, there’s “Does this really work?” That’s fairly easy to answer. The kits appear to be pretty accurate. An investigation aired December 2017 on NBC’s Today Show analyzed sets of three kits with the help of identical triplets. The research showed nearly identical results from three different vendors.
DNA and Ownership
The second question has much greater implication—who owns your DNA? Once you spit or swab some saliva into a tube and mail it off, your most intimate and personally identifiable information is no longer your own. Here, the debate regarding who owns what information gets more complicated.
Many testing firms clearly intend to sell your DNA data. However, most plan to make it anonymous first. An April 2017 report on Gizmodo.com indicated that 23andMe, for example, removes identifying data including your name or contact information before the company sells data to researchers and non-profit agencies. It also aggregates all data before transferring it.
DNA and Privacy Policies
DNA and Health Data
Your DNA test could yield some surprising results—perhaps you have ancestors from parts of the globe you didn’t anticipate or siblings you didn’t know existed. A bigger potential issue to contemplate is the health data present in your DNA.
Currently, insurers are not allowed to discriminate against customers using genetic tests that reveal health risks. Congress passed the Genetic Information and Nondiscrimination Act (GINA) in 2008 to guard against discrimination in health coverage or employment. In 2017, a bill was introduced to relax some of that law’s protections, but it is still in committee in the House of Representatives.
23andMe has also resumed offering tests for ethnicity plus health factors. This bundle includes indicators for a group of health risks including Parkinson’s disease. The Food and Drug Administration (FDA) recently approved the concept after halting the program several years to weigh the issues created by providing potentially life-changing medical information to patients directly. At that time, 23andMe evaluated over 200 markers. The current offering provides analysis that is not as comprehensive.