A conversation with Timothy Caulfield.
A leading ethicist on issues arising from the scientific revolution in health care, Timothy Caulfield warns that the high expectations surrounding new technologies in genome and stem cell research have unleashed troubling social side effects. He cautions that the rush to realize health gains from scientific breakthroughs has led to over-hype from media and researchers, and it has pushed government policy toward a strategy of commercializing research that could damage public trust in science.
One example of this rush-to-profit is the growth of stem cell tourism, in which patients travel to unregulated foreign clinics seeking unproven treatment for their illness. In an interview with Policy Options Editor Bruce Wallace, he explains the high cost — in dollars and to patients’ health — of these treatments. In the short term, he says, the solution may lie in better educating Canada’s family physicians to warn against quack health care.
Policy Options: What is stem cell tourism?
Timothy Caulfield: Stem cell tourism is a phenomenon where providers all over the world use the excitement that has been generated by legitimate stem cell research to sell treatments that are largely unproven. In fact, I think in most cases they are completely unproven. They have no support in the clinical and basic science literature. And it’s a huge industry. Some people speculate it’s hundreds of millions of dollars and thousands of patients every year.
PO: What are the industry’s products?
Caulfield: That’s one of the fascinating things about stem cell tourism: they range from the frivolous — skin cream for wrinkles and anti-aging solutions — to the more serious. There are products for ALS [amyotrophic lateral sclerosis, or Lou Gehrig’s disease], multiple sclerosis, heart disease, a whole host of neurological ailments, autism, to name some examples. That’s the stuff that most concerns me. The entire field concerns me. But it’s the exploitation of patients that are at their most vulnerable, offering them treatments that are “allegedly” effective — and they’re almost unbearably presented that way: “allegedly effective” — for huge amounts of money.
PO: What’s the reaction from stem cell researchers and the legitimate industry?
Caulfield: We did a survey of the international community, asking the top stem cell researchers: “What do you view as the biggest issue emerging issue in your field?” One would think with stem cells as controversial as they’ve been, they’d say embryonics, therapeutic cloning, those kinds of things. But they picked the provision of unproven stem cell therapies as number one. It really highlights the degree to which this has risen to the top of the policy pile. The research community is recognizing that if this continues it could really hurt legitimate stem cell science. It could create expectations that can’t be met by the real science and could foster a backlash. There’s also recognition of the real harm that’s being done by these treatments. And there’s frustration among the scientists trying to get the stuff to the clinic the legitimate way, that there are people out there offering these services that clearly don’t work.
PO: Are these expensive treatments?
Caulfield: Yes, our research has shown that anywhere between $20,000 and $50,000 is the average, and some people suggest even more. That’s per treatment. So you fly to China; you fly to India; you go to Mexico. You add that to the tab and, if you have several treatments, it can be hundreds of thousands of dollars for a treatment that likely isn’t going to work.
PO: What’s driving the demand?
Caulfield: It’s patient demand. This has always happened in the context of medical tourism: people with diseases can be desperate, and they can be exploited. Another important driver is that there really has been a lot of hype around stem cell research [which] promises therapies in the very near future. Clearly this isn’t going to happen. Some of the hype might be driven by the need to get research funding to do this valuable work. And that hype has been picked up by the media, creating this level of expectation that can be exploited by the clinics. The clinics use that excitement in order to sell these kinds of products.
PO: You aren’t going to be able to control the media, so what can be done?
Caulfield: It’s very difficult to control. I’ve called it a hype-pipeline, where there are pressures to hype research more than ever in history. You have pressure on researchers to make their work sound sexy, exciting, immediately relevant. You have the institutions — the universities and funding agencies — that want to make it sound exciting so they can market their work to politicians and the public. You have the media, which simplifies it and makes it more exciting. You have the market, which spins it in a variety of different ways.
You need to take the pressure off the research community. This idea of short-term, near-future products: take that pressure off a little bit. And you don’t need to oversell stem cell research to the public. There’s been some interesting research that shows that the public understands that science is a slow, iterative process, which may not benefit them but may benefit future generations.
But I’m not optimistic in the near future. The pressure right now is to commercialize. And we want to innovate, not to cure cancer but to create jobs, to boost the economy. So that creates some very interesting pressure on the research community and they’re forced to start framing what they do in that kind of language, to fit that kind of expectation. That adds to the environment that makes stem cell tourism possible.
PO: Many of the clients are desperate and fearful, for themselves or often for their children. And they can find “evidence” on the Internet to justify their decision.
Caulfield: This is one of the great challenges facing policy-makers. People can now find any kind of information to support their preconceived notions, so if you want to find a Web site that says stem cell therapies work and [it] looks pretty legitimate, you’re going to find that. That’s why we need a trusted, independent source of information.
Health Canada’s position’s better than in some countries. There’s a little bit of trust between the public and Health Canada. Some of the granting agencies, like the Royal Society of Canada, are also viewed as somewhat independent. There’s a really important place for these kinds of independent voices.
PO: You talked about educating physicians so they’re less ambivalent about making recommendations about seeking these treatments.
Caulfield: There’s some evidence that patients almost always go to the family physician to talk to them, get their advice about these kinds of things. If we could educate physicians to provide accurate information to patients about these therapies, that could have a real impact.
PO: How difficult would it be to use the Criminal Code?
Caulfield: Really difficult. That has happened in some jurisdictions where there are providers. But there aren’t really providers in Canada. We are talking about people who access information on the Internet and they leave for treatment, so it’s difficult for Canada to have any kind of Criminal Code response.
PO: Is there any possibility this industry will just collapse under the weight of its own failures?
Caulfield: Had you asked me two years ago, I would have said yes. But it looks like stem cell tourism is not slowing down. It looks like it is growing and gaining momentum. Things like sports figures getting a treatment and publicizing it allow it to live on. In addition, we have to remember that we are hoping that in the near future we’re going to have real stem cell treatments. So as we nudge closer to having real stem cell treatments, as we have clinical trials that are getting some positive results, we are going to have more therapies that are kind of at the margin that are going to help this whole industry live on.
That makes it all the more urgent to try to figure out ways to address this, because I think we’re going to see it happen in technology. We’re going to see it happen in genetics. As technology moves forward we’re going to see more and more of what I call science-ploitation, where you take the idea of science and exploit it for profit.
PO: I was in South Korea several years ago when the infamous therapeutic cloning case was exposed. It was astounding. Even when it was clear that the so-called breakthrough had been completely discredited, the Korean public was still pretty much divided over whether the researcher was getting a raw deal. There’s a desire to believe in this science.
Caulfield: A profound hope. Some of the people that get most angry at me are patients. They think I’m in the back pocket of the pharmaceutical companies or something like that.
PO: And the range of policy options is…
Caulfield: Canadian policy-makers should think about educating family physicians, and about filling in the gaps in the information that’s out there. And more broadly, the scientific communities around entities like the International Society for Stem Cell Research can continue to try to raise standards, to make it clear what needs to be done to move these therapies into the clinic effectively.
People think we’re trying to put up roadblocks. But [these treatments] are not in clinics yet because the evidence does not support the use. It isn’t red tape. It’s not in the clinics in Canada and the United States because right now there’s no evidence it should be in the clinics.