Personalized medicine: Is Timothy Caulfield right about everything?

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The idea that we are in the midst of a genetic revolution has been with us for decades. The latest iteration of this promise of paradigm-shifting transformation comes in the guise of “” — which, we are consistently told, will revolutionize our health care system and reduce the burden of chronic disease. But can personalized medicine live up to the hype? Will it really result in healthier Canadians?

These are the issues that were tackled by Professor during his recent presentation in Ottawa (and live-streamed across the country) as part of the Lecture Series. CADTH — an independent agency that finds, assesses, and summarizes the research on drugs, medical devices, tests, and procedures — regularly invites prominent scholars and opinion leaders such as Professor Caulfield to participate in the CADTH Lecture Series (well known on social media as ) where they can discuss pressing issues facing health technology assessment (HTA) and health care today. Tim Caulfield is a Canada Research Chair in Health Law and Policy, a Professor in the Faculty of Law and the School of Public Health at the University of Alberta, and Research Director of the Health Law Institute at the University of Alberta — not to mention the author of two recent national bestsellers: The Cure for Everything! Untangling the Twisted Messages About Health, Fitness and Happiness (Penguin 2012) and Is Gwyneth Paltrow Wrong About Everything? When Celebrity Culture and Science Clash (Penguin 2015).

I sat down with Tim after his talk — the most popular CADTHtalks event yet — to chat more about personalized medicine and what it really means for Canadians, our health, and our health care system.

JM: Tim, before we jump into things, can you explain the term “personalized medicine”? What does it mean?

TC: Personalized medicine — which is also often called precision medicine — is the use of genetic information to guide decisions. A person’s genetic profile could help influence decisions about the prevention, diagnosis, and treatment of medical conditions.

JM: And during your presentation, you reminded us of the definition of “revolution.” It’s a term thrown around so much in the media that we might have forgotten.

TC: The Oxford dictionary defines “revolution” as a “dramatic and wide-reaching change in conditions, attitudes, or operation.” This is a pretty high standard!

JM: Why is personalized medicine a promised revolution?

TC: It is often touted as something that will lead to individual empowerment and healthy behaviour change and, more broadly, as a tool that will address chronic disease. The idea is that by knowing your genetic risk information you will change your behaviour.

JM: So…is personalized medicine a revolution then?

TC: In the context of personal empowerment and behaviour change, the answer has to be no. All the best available evidence tells us that providing genetic risk or predisposition information does not lead to significant behaviour change. And, in fact, the personalized advice that is provided by direct-to-consumer genetic testing companies often tells us to do the things we already know we should do (exercise, eat healthy, manage our weight, don’t smoke, get enough rest). For example, and I’m guessing here, reducing smoking by 5% would likely do more to improve health than the big push to personalize our lifestyle decisions. And when only 15 per cent of Canadian kids meet minimum activity targets, should we be spending time worrying about or tailoring our lifestyle choices to fit our genes? Let’s focus on the basics!

JM: In fact, there is some evidence that it could even potentially lead to harms. Can you explain that?

TC: If you know you’re not genetically at risk for a serious chronic disease like diabetes, would you still eat healthy and exercise regularly? You might just say: “Why bother?” Not only that, but the hype of a revolution itself can be harmful, skewing policy priorities away from important public health initiatives.

JM: Is it true then, that a weigh scale really is a better predictor of future health risk than genetic testing?

TC: I think the information that you receive from low tech devices like your bathroom weigh scale and a blood pressure machine probably provide more powerful risk information than the vast majority of data you will receive from a genome scan.

JM: Apart from improving our health, there’s a whole other side to genetic testing and personalized medicine. It sounds like businesses are cashing in — even dating sites! Can you tell us a little about this?

TC: It is true. There are a lot of crazy direct-to-consumer genetic services out there.  Dieting, exercise and, even, dating. I call it “scienceploitation”— taking a legitimately exciting area of science, like genetics, and exploiting the research results with hyped language to sell products that have little actual science behind them.

JM: And genetic testing to predict your child’s performance in different sports? Is that really happening?

TC: Yes. There are companies that are selling testing services for this exact thing. Once again, the data to support these products is pretty iffy. Want to know how fast your kid is? Just time him running. I’m a lifelong track athlete. Still love it. But when I underwent genetic testing — it didn’t predict I’d be a sprinter. Why not just try it out and see what happens?

JM: What do you think might be the real revolution in medicine then? Can you tell us about it?

TC: Do less. There is a counter-revolution to the big push for more data. This is the idea that we should be doing less medicine. Fewer tests. Less screening. There is an increasing body of data to suggest it may be the best approach. The Choosing Wisely movement is a good example of this trend.

JM: What would your take home message on genetic testing and personalized medicine be?

TC: There have been successes in personalized medicine — such as pharmacogenetics and determining who will respond well to certain medications — but progress is slow. Good things will happen. But it’s not a revolution — it’s a slow and iterative evolution, like most areas of science. Talk of personalized medicine as a revolutionizing social force seems to be largely hype.

JM: Speaking of hype, you talked about the “hype pipeline.” Can you tell us a little about that and why we’re hearing so much hype about personalized medicine when the evidence just isn’t there?

TC: Science hype is complex phenomenon. It involves many actors and a range of systemic pressures. I’m not blaming anyone. It includes publication and grant writing pressure, the writing of overly optimistic abstracts and press releases, the media interest in a good story, and, of course, the market.

JM: To wrap it all up — based on your presentation and our conversation today — what’s your call to action?

TC: Let’s stop with the revolution language. Focus on the science and not the hype. Report science in plain language that is understandable — but if it isn’t really translatable don’t sex it up. Recognize that science takes time. Change the incentives. And embrace truly interdisciplinary research, as this is how you get different perspectives on the true social impact of a technology.

JC: And Tim — one final question for you. Is Gwyneth Paltrow really wrong about everything?

TC: No, but she’s a great example of pop culture twisting medical/science info into hype!

For more information about the CADTH Lecture Series or to attend the next lecture in person or online you can visit www.cadth.ca and follow us on Twitter: @CADTH_ACMTS (watch for the CADTHtalks hashtag). Tim Caulfield can also be found on Twitter: @CaulfieldTim. You can read more from Tim in his two recent national bestsellers: The Cure for Everything! Untangling the Twisted Messages About Health, Fitness and Happiness (Penguin 2012) and Is Gwyneth Paltrow Wrong About Everything? When Celebrity Culture and Science Clash (Penguin 2015).