Why affluent families may want to reconsider direct-to-consumer genetic testing

Ads suggest they make great Father’s Day or holiday gifts. Around 30 million people have tried them and that number is projected to grow to 100 million next year. Direct-to-consumer genetic tests that provide information about your ancestry and risk of developing certain health problems are undeniably popular, but people from affluent families may want to think twice before diving into this trend.

These are the issues to consider before deciding to try one of these tests:

• Accuracy: Unlike clinical genetic tests, the direct-to-consumer versions only test a very small portion of a person’s DNA, in some cases less than .01%. That can leave significant gaps in the information these tests provide. For example, there are more than 1,000 BRCA1 and BRCA2 gene mutations that can increase a person’s risk of developing aggressive breast and ovarian cancer, but some direct-to-consumer kits only test for three of the possible mutations, which could provide a skewed, inaccurate assessment of risk. There’s also a high risk of false positive results. One study published in Nature found that 40% of variants in a variety of genes reported in direct-to-consumer testing raw data were false positives, which can lead to a great deal of anxiety and unnecessary diagnostic testing.
• Expert analysis: Direct-to-consumer genetic tests are not intended to be used as diagnostic tools. If you underwent clinic genetic testing, your results would be compiled, assessed, and communicated to you by geneticist. That’s not always the case with direct-to-consumer tests. One study found that some test services simply compare customer’s raw data with risk results in publicly available databases that may contain inaccurate information.
• Privacy: There is no definitive guarantee that the information gathered in direct-to-consumer genetic tests will remain private. Some companies have shared data with government and law enforcement agencies. De-identified information may also be shared with other companies, researchers, and databases.
• Impact on other family members and enterprises: If your testing results show an increased risk of a serious disease like cancer or Parkinson’s disease, there are ramifications for your siblings, children, and other relatives. Would you share the information with them? Would they want you to do that? If the information becomes public, it could affect business and succession decisions. What if a test finds a distant, previously unknown relative? Could connecting with that person pose a risk to the family’s assets?

A potentially more valuable alternative to direct-to-consumer genetic testing is to consider testing through a genetic specialist. A geneticist can advise you about which health risks it makes most sense to test for based on your family and personal health history. There are also tests that can determine whether certain medications, such as certain antidepressants and blood thinners, will be effective.

In addition to honing the target of your testing, a geneticist will carefully review all your results with you, answer any questions that may arise, and refer you to other specialists when needed. You can then use the information to work with your physician to build a personalized risk management plan that may include earlier or more frequent cancer screenings, preventive treatments, and environmental and lifestyle changes that may lower risk and help you make more informed health decisions.