Back in September 2010 I wrote about the controversies associated with home-based genetic testing companies and their products. This topic remains much in the news, as the FDA has declared their intent to regulate these products and several companies have withdrawn from the direct-to-consumer market. Reuters reported this week that in a survey of over a 1000 people who used direct-to consumer genetic testing, the majority found the tests easy to interpret, but some do not fully understand their results. For ¾ of the users of these highly controversial tests, their motivation to use them was to find out something new about their genetic makeup to help them make health improvements.
According to the article, “Testing companies say the tests are useful for modifying bad habits that could contribute to future health risks, especially if someone is predisposed to disease” and that, “more than a third of people [surveyed] said they were being more careful about their diet as a result of getting the tests, 15 percent had changed their medications or diet supplements and 14 percent were exercising more.”
The question for me is whether these tests and their findings will truly lead to lasting lifestyle changes in the pursuit of better health. The vast majority of us already know that it is important to eat 5 servings of fruits and vegetables, exercise at least 5 times per week and floss twice daily in order to maximize life span and minimize disease. And yet, how many of us are able to sustain this simple set of prescriptions for a lifetime, much less a month? Did most of those who ordered the genetic tests really need to spend $500-$1000 to make the right lifestyle choices, many of which are commonly known? Will those who learned something material enough to change their medications or start taking diet supplements have the ongoing reinforcement to persist in this new treatment regimen? Lastly, how do findings from these tests make people behave if they find they are NOT genetically predisposed to certain diseases? Does it raise their risk-tolerance and drive them to unhealthy behaviors they might otherwise have avoided?
To illustrate my points further I return to my favorite poster boy for genetic testing: Ozzy Osbourne. In September I also wrote about a major project from a company called Knome that was using its rapid genome decoding technology to sequence Ozzy Osbourne’s genome. Their purpose, aside from promoting their company, was to try to determine why Ozzy had managed to stay alive despite the massive amounts of abuse he had self-inflicted. Their hypothesis was that Ozzy might have some sort of genetic composition that made it possible for him to absorb the baseball bat-to-the-head equivalent of substance abuse and physical injury that he had sustained for decades.
My question is this: If Ozzy had used a home testing kit to learn about his genetic predispositions 40 years ago, would he have cleaned reacted by cleaning up his act or would things have unfolded exactly the same way, bat heads, ant-snorting and all?
In a recent article in the Sunday Times (UK), Ozzy was quoted as saying, “If my DNA told me that I was a goner, I could still get run over by a lorry tomorrow, long before whatever it was they found had a chance to kill me.” That is precisely what worries me about these tests. I am not concerned that they are dangerous or that they might mislead people through inaccuracy, although the latter may be true in some cases. What concerns me is that they may be a red herring and an expensive one at that. Yeah, you might find out something important about your odds of getting a particular disease, but are you really going to make long-term life changes to deal with it or learn some new preventive approach you didn’t already know?
People have a hard time making short-term lifestyle changes when the results are very long term in nature and a particularly hard time when the cause and effect are not closely tied together. For instance, there has been plenty of research about how eating lots of fruits and vegetables, particularly ones with certain anti-oxidant qualities, can reduce cancer risk. There is also a lot of evidence to suggest that eating large numbers of chemically-laden foods promote cancer risk. And yet, how many of you are holding a stalk of broccoli as you read this article and how many of you are holding a Diet Coke? Note that just because said Coke has cherry flavoring does not qualify it for fruit status.
There are numerous disease management and preventive health programs in the marketplace today that have tried a myriad of tactics to incentivize people to engage in healthy, disease-mitigating behaviors. Most of them have failed miserably even when it is 100% known that the consumer already has a particular disease, not just a propensity for one. The only incentive programs that have been consistently successful are those where the consumer is paid meaningful cash money to engage in specific wellness activities. And there are few long-term data available to know how long the bribery approach even lasts. It has been documented time and time again that just giving consumers information without incentives doesn’t do diddly.
But back to bat-man: Ozzy Osbourne’s genetic analysis included the following health-related findings:
- He is hyper-sensitive to caffeine
- He is 6.13 times more likely than the average person to have alcohol dependency or alcohol cravings; 1.31 times more likely to have a cocaine addiction; and 2.6 times more likely to have hallucinations while taking cannabis
- He scored low on the genes associated with heroin addiction and nicotine addiction
- He does not have genes that predispose him to Alzheimer’s, Cancer or Parkinson’s
Now, do any of us think that Ozzy would have used less drugs and alcohol if he had known these things about himself when he was young? Maybe, but I doubt it. The rock and roll lifestyle he is a part of lends itself to excess and put him in the way of much bad behavior as a young man. Do you think he didn’t know that heroin and tequila were bad for him without having had genetic profiling? Had he known early on that he could take an 18-wheeler full of drugs and still survive, might he have taken even more (assuming there were any left!)?
How does you use the information that you’re not disposed to Alzheimer’s, Cancer or Parkinson’s? Does it give you freedom to do things that might otherwise cause these conditions, if such a thing were possible? Great! No cancer genes—now I can smoke two cigarettes at a time! If Ozzy had found out he was predisposed to any of these illnesses, what specifically would he be able to do about it? Well, the only known preventive medicine for these diseases is (you guessed it) good diet, exercise….you get the drift and probably didn’t need to spend $1000 to get it. You might want to save those dollars for your insurance co-payments later because you’re going to need them.
There are certainly genetic testing kits that have specific utility and are very legitimate, such as for fertility or for determining if a particular drug might have a negative or negated effect on your body. What I question is the consumer-direct genetic testing that isn’t driven by a specific medically-identified situation because it feels a little disingenuous to me. It isn’t an issue of whether people should be allowed to have these tests; I definitely think consumers should be able to spend whatever they want to learn whatever they wish about their own bodies. I think it’s a question of how these tests are marketed. It is one thing to tell consumers they can learn about their ancestry and isn’t that cool; it’s another thing to suggest there really are meaningful health planning benefits to the average product user in the absence of a clear medical situation that has presented itself. Caveat emptor is what all I am saying. You might get about the same level of meaningful medical advice by consulting a magic 8 ball.
For instance, on the 23andMe website it states that 1 in 5 people will get diabetes before they turn 79, but that people with certain genetic variants have a 1 in 3 chance (for $429 you can have the test to tell you which bucket you are in). So where does that leave the average person? Well, if you have those genetic variants and you’re a betting man you are going to say, “I’ll be the one to dodge the bullet, bring on the hostess cupcakes!” If you’re conservative by nature, you are more likely to say, “Pass the carrots.” But would knowing from the test that your odds went from 1:5 to 1:3 change your overall way of living? Doubtful. You are either the kind of person who lives your life bellied up to the craps table yelling “come on baby, hard eight!” or the one standing in the background saying, “I’ll just have a club soda.” And once again: the answer to minimizing diabetes risk for your $429? Better diet, more exercise. I would have sold you that advice for $425!
But back to Ozzy: one of my favorite findings from his sequenced genome is that he is directly related to Stephen Colbert. I guess they share a gene that predisposes them to funny little glasses. Let’s hope they have the perseverance to make the lifestyle change to Raybans before it’s too late.