1. A worthless preparation fraudulently peddled as a cure for everything that ails a person.
2. A product that has been proven to not live up to the vendor’s marketing hype.
3. Speech or writing intended to deceive; humbug.
I am a big fan of Direct to Consumer (DTC) testing*, believing that allowing consumers the opportunity to have direct access to testing can be a positive step in empowering consumers to get involved with their healthcare. I believe that the DTC model can significantly increase the efficiency while dramatically reduce the cost of obtaining routine laboratory testing. I also believe that the DTC model can and should be consistent with the care being received under the direction of the “trusted advisorship” of a personal physician. Again, optimal care can be received when a consumer is engaged in their health, empowered with information (included that received from their trusted physician advisor), and exercising the freedom to choose how they will live their life (including how to manage their health).
I am concerned, as with most technology advances, there are less than honorable means to the perceived ends made possible through the technology. I see this potential for abuse more so and more glaringly in the burgeoning field of genetic testing. During the last three months alone, it seems that I have heard about a dozen new genetic technology company entrants jump into an already crowded space – 23andme, Navigenetics, Consumer Genetics – not to mention old standby market leaders like DNA Direct, IdentiGene, and DNA Worldwide. A good summary website (somewhat outdated) contains a much broader list of companies and information about direct to consumer genetic testing.
These concerns are echoed by HHS and others in policy organizations about the potential for abuse who formed a special Secretaries Advisory Committee on Genetics, Health, and Society. The GAO has even got involved, when they purchased four types of genetic tests from purveyors and issued this damning report in July 2006. Their findings echo the American College of Medical Genetics sentiments which were clearly stated in a policy statement in 2004. The government clearly supports the concept of Personalized Medicine made possible through genetics and genetic testing, however, the summary from the government is one of caution, with appropriate oversight, and with an appropriate advisory element from qualified medical professionals.
My feelings on the subject are that we need to press forward with the advancing technology, but we need to be vigilant about how and who we are promoting to this end. I still shudder when I read articles like this one from Monterrey Herald published on August 22, 2007 (or this one, this one, this one . . . you get the picture). The promotion of surreptitious means to achieve identification should be reserved for CSI rather than an upstanding commercial enterprise. In addition, the very nature of genetics testing calls for qualified advise, counseling, and education to help consumers understand that the identification of a gene does not mean that you will acquire the disease. There are also significant emotional, cultural, and societal implications of genetic testing which are not as pronounced in other forms of testing. Again, for these reasons, genetic testing needs to be part of a more integrated approach to health and wellness.
I believe companies like DNA Direct have chosen the right approach. They have a professional website which welcomes the public with clear information, concise messaging emphasizing the need for comprehensive testing (which includes education, licensed genetic counselors, and integration with personal physician), corporate ethical standards, and use of only certified labs with appropriate medical oversight. I get a clear sense of the ethics, privacy, and honorable means that DNA Direct is pursuing. I don’t get any of the snake oil salesmen feel, instructions on how to procure samples from body fluid stains on intern dresses, and the flashing blue light special of the week that appears to pervade some of the other genetic testing websites. This is all good, because their will be plenty of others who will seek to manipulate the seamier sides of all of this.
All this bespeaks my contention that your personal health information, including your genetics profile, will be a form of currency in the future world of Health 2.0. It will become an important task not only acquire this information but an imperative to protect it as well. As is being demonstrated, the freedom to acquire this information is becoming easier than ever. And with this freedom (advancing technology) comes the responsibility to protect the public through appropriate policy and ethical companies that advise the increasingly engaged consumer against the unintended consequences of advancing technology.
This mix of policy, education, and corporate responsibility should be the protective water that won’t mix with DNA Hucksters and the misguided claims of their modern Snake Oil.
* DISCLAIMER: I continue to serve as a medical advisor for MyMedLab, a direct to consumer laboratory testing services. MyMedLab focuses on preventive testing and wellness profiles, but does offer some limited genetic testing as part of our direct access laboratory testing.