Personal Genetic Testing Raises Interest and Worry among Parents

Last summer, I wrote about the FDA’s intention to regulate direct-to-consumer genetic tests, which had begun to enter the market in earnest. Based on a recent report by Global Industry Analysts, Inc., both the service- and product-driven markets for genetic testing continue to grow, and according to a national poll, parents appear to be interested in testing their children.

Why test children with genetic testing kits at home? Privacy, for one thing. Additionally, parents who were interested in testing cited the potential to head off disease for which their children might have a genetic predisposition. The parents who were not interested in performing genetic tests at home felt that the results might cause them to worry.

The potential for ambiguous genetic test results to cause alarm or worry in parents who do not understand how to interpret them has been a point of contention among critics of direct-to-consumer genetic tests, although recent data has suggested that distress over results may not be all that common. However, the study was based on adults taking a genetic test. The adult or child reaction to results based on the testing of a child may be a whole different ball game.

The issue that is currently raging -- test validity and interpretation of results -- will not be addressed as easily. Currently, there are no standards for these tests -- indeed, during a Congressional hearing last summer, we learned that results can vary widely between testing services, prompting the GAO to call out some tests as either misleading or useless.

Health care professionals understand that results from genetic testing can vary due to the way that companies choose to analyze and interpret data. The general public does not. Truthfully, I’m not sure that the hunger for this kind of information would subside even if the public did have a better understanding, due to the novelty of owning your own genetic information.

More companies are likewise hedging their bets and entering what is looking to be an extremely lucrative healthcare niche that appears, for all practical purposes, to have gone global. Consumers can order tests from companies in a number of countries, in a “buyer beware” market that could pose similar regulatory challenges as online pharmacies.

Just one more area of health care in which the questions proliferate like the hare and the answers come at a tortoise’s pace.