Personalised medicine, self-management and intimate technologies: a philosophical analysis

Published on January 31, 2016   29 min
0:00
Welcome to this talk. My name is Hub Zwart, I'm a Professor of Philosophy at the Faculty of Science, Radboud University, Nijmegen in the Netherlands. I would like to talk to you today about a topic which I think is quite timely, personalized medicine. Personalized medicine is a new development within the medical research which, according to some at least, could have enormous consequences for healthcare, but also more broadly, let's say on a cultural level, it could change the way we see ourselves and we think about ourselves as human beings.
0:34
So I will talk about personalized medicine, the technologies that it involves, the consequences it may have. I will talk about this from my philosophical perspective because, well, I think that the cultural dimension, so to speak, the societal dimension of personalized medicine may be at least as fascinating as the purely medical level. I will talk about personalized medicine also as a way to achieve what we tend to call in philosophy, self-management. So let's say the old idea of power to the patients, and the idea is that personalized medicine and the technologies that are involved in that will finally allow us, patients, citizens, to become self-empowered, to become the managers of our own health condition. I think that is a fascinating ideal, at the same time, I'm a bit skeptical about it and I'll explain my reasons for being so later on in my lecture. Before going really into the presence and into what personalized medicine is, and before going into the case study I will use to elucidate and clarify personalized medicine and self-management a bit further, I would first of all like to give an historical introduction because in order to really understand what personalized medicine is and what it may mean for human existence and human life and human health, I think it is important to see this development against, let's say, the historical backdrop, the historical horizon. And that's why I would want to go back with you to a very important event.
2:15
June 26, 2000, an important year. The end of the 20th and the beginning of the 21st century and during this press conference in Washington DC, the human genome was presented. It was more or less the culmination point of the Humane Genome Project and the result of that project, which was actually quite costly, were proudly presented by President Clinton together with two top scientists namely Francis Collins and Craig Venter. And they presented the human genome, which was, technically speaking, a composite genome, so a genome that is not associated with one particular individual, but rather an assembly of genomic information coming from various humans. So that's why it is sometimes referred to as the We-genome, that this is what we are, this is our genome. And the idea was that this would function as the human reference genome. So that in future, if individuals would sequence their personal genome, they could use this general genome, this We-genome as their reference. At the same time, interestingly enough, besides this so called We-genome, some of the scientists involved were quite famous, that's why I call them genomics celebrities, also sequenced their own personal genome and some of them even published their own personal genome. Famous examples are James Watson, the first director of the Human Genome Project or Craig Venter, who had his own human genome project and who published also his own personal genome and even wrote a book about it, he calls it "A Life Decoded" and that's an interesting book because in this book, he tries to make a connection between his personal genome and his life events, his biography, also including his history of illness and disease. And he explains that for him, this genome made it clear why he was such an ambitious researcher and why he had certain weak spots in terms of health vulnerabilities. So this personal genome, this Me-genome, helped him to come to terms with his own autobiography, an interesting document from the perspective of genomics. So besides the We-genome also a series of Me-genomes were published.
4:37
At the same time, quite soon it was quite clear that actually this big human genome project from various perspectives was a bit of a disappointment. Well, of course, it was a costly project, so there were high expectations involved and one of the expectations was that after 25 centuries of self-reflection, that 25 centuries ago in ancient Greece, the idea was that the basic objective of research is self-knowledge, we want to understand ourselves, we want to know ourselves, and the idea was that the human genome sequence would finally allow us to answer the question, "Who are we?", would finally provide us self-knowledge, but this wasn't the case. The human genome is a very ordinary genome. There is nothing unusual about the human genome. It's quite similar compared to the genomes of other organisms such as mice or chimpanzee. The expectation was, we will find the so called factor X, the constellation of genes that are typical for human intelligence and human creativity. But we didn't discover anything like that. Human genome is a very normal genome. Actually, in June 2000, the sequencing process wasn't finished yet and the typical outcome of a human genome sequence is kind of an interesting picture that looks like a modernistic painting, a bit abstract, but it's not something which tells us much about our self. And also in the individual genomes, there aren't too many differences between the genomes of individual human beings. So in order to explain something about your life, the genome and even the personal genome of a particular individual doesn't tell us much. We always have to see it in relationship with environment, for example, or crucial life events or lifestyle. So, life is too complicated to be explained on the basis of a genome sequence alone. So from various respects it was a bit of a disappointment. Also, the idea was that within two generations, thanks to the human genome, important health challenges such as cancer, for example, would belong to the past. The idea was that within two generations the word cancer would only mean a constellation of stars and would no longer be associated with various diseases. But, of course, that was far too optimistic because the medical implications of the Human Genome Project were quite limited. And then the idea was, well, maybe if we really shift to personal genome, if every individual will sequence his own genome for $1,000 or something like that, then the technology evolves and it becomes increasingly easy and increasingly cheap to do so, that will help us. But again, so far at least, personal genomes don't tell us that much about individual health.
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Personalised medicine, self-management and intimate technologies: a philosophical analysis

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