【Beijing Forum 2010】Interview with Nikolas Rose: Promises, Problems, and Perils
Peking University, Nov. 12, 2010: Prof. Nikolas Rose is a prominent British sociologist and social theorist. He is currently the James Martin White Professor of Sociology at the London School of Economics and Political Science and acting director of LSE's BIOS Center for the Study of Bioscience, Biomedicine, Biotechnology, and Society.
On the afternoon of Nov. 6, Prof. Rose presented his thesis "Personalized Medicine: Promises, Problems and Perils of a New Paradigm for Health Care" at Beijing Forum 2010. Reporters from PKU News were able to interview Prof. Nikolas Rose during the Medicine Panel at PKU Health Science Center.
Q: Of the “personalized, predictive, and preventive” medicine or medical services — known as “three Ps” as you mentioned in your lecture — which one is the most difficult to achieve?
A: I think that all the three “P”s are quite difficult to achieve. First of all, “personalized.” What happens with genomics is not the genome exactly in your own situation. You are placed in a group that is all probabilistic. So you are placed in a group of people that have a higher or lower probability of responding to a drug or developing a disease. So that’s not really personalized.
And “predictive,” the predictions, I think, are very difficult to make for most common conditions, even with the clearest disease, Huntington’s disease is a one-gene disease. If you have the genetic signature, you are certain to get this disease, but it doesn’t tell you when you are going to get this disease, how quickly it’s going to develop; it doesn’t tell you how long you are going to live. So both “personalized” and “predictive” are difficult. And in terms of “prevention,” Huntington’s disease is a very good example because the gene was identified 50 years ago and sequenced 40 years ago, but we have no therapy. So all these “P”s, though sound wonderful, are not easy to achieve.
Q: We see today people are much too anxious about their health but actually they are not as “weak” as they suppose, and that’s one of the reasons why they seek personal genetic tests and scanning from companies which offer such service on a commercial basis. Have you and your group considered any solutions or recommendations as to how to make the “intimidated” people relax?
A: I think there is a concern that people who are worried about their health will go to these websites, they will pay thousands of dollars, and they will get information which they won’t be able to interpret. It may well make them feel more anxious because they know they have a slightly increase risk, but they won’t know how to interpret because it is very difficult to interpret the risk. If they say you have a 50% increase risk of developing a particular condition, what does that mean? If one in a hundred people are going to develop that condition, and you have a 50% increase risk, that means you are probably in a group where 1.5 in a thousand people are going to develop that condition. It sounds like you’ve got a huge increase risk, but in fact, unless you know about the population risk and the whole series of other things, it means nothing. So there is really fear that people will become more anxious, and they will rush to their doctor, and they demand more tests and more treatments.
Q: We can see that you hold the rush towards “personalized, predictive, and preventive” medicine very problematic, not only in medical science itself but also in ethical concern...
A: I think it’s very problematic. I should say I’m speaking for myself, not so much for the Nuffield Council. They are very moderate in their views. But if you read the book by Francis Collins, the one just published called The Language of Life, he is so enthusiastic for “personalized medicine,” and he gives lots of examples of people who benefit from it. But these are people with more or less single-gene disorders. For single-gene disorders, genetics is useful. But for diabetes, for heart disease, for stroke, for most kinds of cancers, it’s not actually very helpful. So I’m very skeptical. Especially in countries like China, you know the health problems are to do with the environment, with food, with pollution. They aren’t going to be solved by the three “P”s in my view.
Q: So what kind of rational attitude should be assumed towards “personalized medicine” by patients, by medical professionals, and by the policy makers at the present?
A: I think at the moment most people should be quite wary of it. Of course people have been free to buy diet books, to consult their stars, to peruse the I Ching. For centuries you can’t stop people wanting to find out the future. But at least the companies that sell the tests should be very clear on their websites, what can be told and what can’t be told by the tests. People should educate themselves about the tests. Health professionals should explain to people what the tests can show and what the tests can’t show. So at least if people take the tests, they should do so with full knowledge. And if a doctor sends you for a genetic test, you will have genetic counseling. But if you go for tests on these websites, you will get no genetic counseling at all, you will just get the result, and you will be left on your own to make sense of it. I don’t think that is sensible.
This is probably most worrying for children, whose parents getting tests for them. How much is happening we don’t know. If a parent gets a test that says the child has a risk of developing a psychiatric disease. Then the parents feel the child is going to change. Teachers feel the child is going to change. The doctor feels the child is going to change. Every time something strange happens to the child, they think it’s the child developing a disease. The child can’t get proper concern, and I think that’s really worrying.
Q: All these three developments — “consumerization,” “responsibilization,” and “individualization” — impose a question: how can we balance individual’s free choice against social solidarity?
A: I still think that the most powerful ways of reducing the burden of disease across the society is to act across the society as a whole. The second thing is about educating people to manage their own diet and their own fitness. The third point is to make people less worried about disease. Health and disease are almost like religion, the religion of health. They are always worried about their health. Don’t be quite so worried about your disease, don’t be quite so worried about your child’s disease, the children are quite resilient, quite robust. The last thing, I think, is to be very wary about the claims made by especially by the pharmaceutical companies that they have developed drugs that can cure your disease without side effects. Almost every drug that you are going to take for your disease, the disease you think you might have, is going to carry some side-effects. So the dream of a smart drug that will just do away with a disease and leave you perfectly OK, at the moment I’m afraid that is a bit of a fantasy. So don’t rush to the drug cabinet, and that will be another thing I’d say to the individual.
Q: When, as you said in your thesis, public services are turned into markets or quasi-markets and people increasingly prefer individually purchased services to public provision, what are at stake in terms of healthcare and medicine? What are the possible negative consequences?
A: I think I will first talk about some negative population consequences and then some negative individual consequences.
If all the people who are wealthy opt out of the public health system and choose to buy their medicine and healthcare privately, that leaves the public healthcare system for the weak, the poor, the homeless, and the very sick. That places a big demand for the public health system and also a bit of stigma on those people who benefit from the public health system. And it also means that for people who are most likely to be articulate to argue for change and for improvement in public health, they’ve already got out of the public health system and they buy their medicine themselves. They don’t care about this lousy system. And people who are in this system are often powerless. They don’t have a voice, so they are not going to argue for change.
The second thing for the individual, I think, is going to depend a lot on healthcare systems. In the United States, you see the enormous escalating cost of treatments for individuals because the individuals pay, the doctors charge a huge amount, the hospitals charge a huge amount, everybody is making vast amount of money. The amount that it costs American citizens to pay for their healthcare is phenomenon. The market is going to become very expensive. The second thing that might happen happens a little bit in the UK, where there is a bit of the market where people go to the market, and they buy tests, they buy all that privately, but if they are really suffering from serious disease, then they go back to the public healthcare system. So the public healthcare system takes up all the cost and the private systems just deal with it slightly. The cost of the public system spirals because the private systems are not picking up. So I think there are many problems when you get these divisions in the market.
I’m old-fashioned. I believe in the principle of solidarity. I believe I’m affected by you being ill and you’re affected by me being ill. So I should pay a little bit, if you get ill, to help you, and you should pay a little bit, if I get ill, to help me.
Reported by: Chen Xi and Zhang Hongyi
Transcribed by: Chen Xi