The ethics of direct-to-consumer genetic testing

A report into a 1-year investigation of genetic testing firms selling directly to consumers by the US General Accounting Office (GAO) concluded in July that test results were “misleading, and of little or no practical use”. As a result of the investigation, the US Food and Drug Administration is in the process of tightening regulations for firms that sell home genetic testing kits.

On their websites the direct-to-consumer genetic firms look authoritative: they encourage customers to consult their doctors or seek genetic counselling before and after results, ask customers to sign informed consent forms, and provide information on the ostensible scientific validity of the results they provide. But the GAO report describes how 15 companies responded to inquiries from five undercover consumers who had submitted their DNA samples for testing. GAO investigators found “egregious examples” of deceptive marketing, in addition to poor or non-existent advice from supposed consultation experts. The report also raised concerns about privacy: what happens to your DNA once you send it to a private company? All these issues raise ethical concerns about providing genetic testing directly...