Should you check your DNA?

In medicine, aggregated personal health data, including genetic information, is extremely valuable, even lifesaving. Researchers can analyze data from electronic medical records to find patterns of diseases, see how well treatments work across broad populations, and to pinpoint risk factors for a variety of ills (identifying details for each patient, such as name and address, are blocked to protect the patient's identity).

Some organizations also gather and analyze genetic information to combat specific diseases as a public service. One such organization is the bone marrow donation site DKMS Americas, which collects genetic information from volunteers to create a database of potential donors for cancer patients. This service has saved and improved many lives over the years.

But what happens when the analysis of genetic information becomes a consumer product? The testing company 23andMe, for example, collects a DNA sample from a you and analyzes it to tell you your genetic heritage and your risk for various diseases. The wellness company GeneMe collects DNA to create personalized supplements to improve your health. And the list goes on. These companies encourage customers to use their knowledge of disease risks to make healthy lifestyle choices that might reduce these risks.

In an "Ethicist" column in last Sunday's New York Times about DNA testing companies ("Sizing Up the Family Gene Pool"), however, Ariel Kaminer explains that consumers don't always have control over or knowledge about how their genetic information is used:

Many of these companies do use customers' data for medical research or commercial applications, or they sell it to third parties whose interests you might never know. Legally they can't do that without your consent, but the fine print on those consent forms goes by so quickly that it can be hard to follow.

Kaminer also points out another problem: the results of these tests can be wrong. "A Government Accountability Office investigation into so-called direct-to-consumer genetic testing found inaccurate results and exaggerated claims about how much those results could really tell you," she writes.

Your genetic information is legally protected by the Genetic Information Nondiscrimination Act of 2008 (GINA). The law prohibits discrimination against individuals by employers or health insurers based on the individual's genetic information, which includes genetic tests and genetic diseases in that person or their family members.

But consumer genetic testing is new territory. It's true that this genetic information might be useful to the consumer and the consumer is legally protected against discrimination. But what if the information is leaked or hacked, or the data is misused in unforeseen ways, or by new, yet-to-be-invented technologies? The recent furor over Google's privacy policy demonstrates that we don't always understand what we're giving up when we use new technologies.