“I ask this crucial question: how did we move from what was originally presented as a communitarian vision for the new genetic biomedicine to the now-dominant personalized medicine paradigm?”—Donna Dickenson
The following post is by Donna Dickenson, author of Me Medicine vs. We Medicine: Reclaiming Biotechnology for the Common Good.
Even in the increasingly individualized American medical system, advocates of personalized medicine claim that healthcare isn’t individualized enough. Backed up by the glamor of new biotechnologies such as direct-to-consumer genetic testing or neurocognitive enhancement, personalized medicine—what I call “Me Medicine”– appears to its advocates as the inevitable and desirable way of the future. By contrast, what I term “We Medicine”—public health programs such as flu jabs or childhood vaccinations—is widely distrusted and highly vulnerable to austerity cutbacks.
I don’t automatically assume that Me Medicine is bad and We Medicine is good, even though the proponents of personalized healthcare very rarely challenge their own preconception that the reverse is true. Instead, I do my level best to give a balanced, evidence-based account. In some areas of Me Medicine, such as pharmacogenetic individualized drug regimes for cancer care, there really has been genuine progress, but the evidence base is patchy or even damaging for other Me Medicine technologies such as private umbilical cord blood banking. Given that the scientific evidence alone doesn’t dictate that you have to be ready to accept the supposed revolution of personalized medicine, what does?
I look critically at four possible explanations for the growing dominance of Me Medicine, some of which turn out to be more convincing than others: a sense of threat to our health, narcissism and decline in public-spiritedness, corporate interests backed up by neoliberal government policy, and the near-sacredness of autonomy and choice in our thinking. And I ask this crucial question: how did we move from what was originally presented as a communitarian vision for the new genetic biomedicine to the now-dominant personalized medicine paradigm?
How can we balance the role of the individual and the communal in healthcare and our civic life? That’s the core of the conflict between Me and We Medicine. I’m a political philosopher by training, so I know how far back these debates go, and how they go on and on. They’re embodied and emblematized today in the personalized healthcare movement, but of course they have a much older pedigree.
I’ve long been fascinated by the old notion of the commons—communally created and owned public resources in which everyone has an equal property. Used by the ecology movement to reclaim a public stake in biological resources or communal land, the idea of the commons is also very pertinent in biotechnology. We can think of the human genome or of population immunity to infectious disease as forms of the commons, I argue, but where people refuse to be vaccinated or where firms take out monopoly patents on human genes, then we face a new kind of “tragedy of the commons”.
Primarily in terms of the commodification of the body, much of my past work has been devoted to showing how concepts from the law of property, such as the commons, can be applied to medicine so as to protect the rights of the vulnerable. In my academic books Property, Women, and Politics (1997) and Property in the Body (2007), as well as in my popular-science books Body Shopping (2008) and Bioethics (2012), I examined the way in which the human body, particularly women’s tissue, is fast becoming an object of commercial exploitation, but I also offered strategies using property concepts to overcome exploitation. As well as being tied together by property concepts such as the commons, my earlier work and this new book are linked through the constant surprises thrown up by the commercialization of biomedicine and the difficulty of regulating that unpredictability.
Throughout Me Medicine vs. We Medicine, I’m driven by the question of how we can reclaim biotechnology for the common good, a particularly great challenge in the face of corporate interests in privatizing that commons. In all the Me Medicine case examples that I discuss, the public sector, as the entrepreneurial state, is being asked to sponsor the growth and shoulder the risks for the private sector. Private capital has not simply relied passively on a permissive government regime in areas such as genetic patenting, but has actively sought state backing in rolling back regulatory measures and in developing the blue-sky science that can then be “translated” into profit-making services.
Personalized medicine, however, has created risks as well as rewards for firms: for example, drug companies accustomed to relying on mass-market blockbusters will have to develop a different business plan if pharmacogenetics is to become commercially viable. But Me Medicine illustrates capitalism’s flexible talent for creating new products and markets where none existed before. That, rather than scientific plausibility, goes a long way towards explaining private umbilical cord blood banking and retail genetics. Undermining the distinction between treatment and “cosmetic neurology” or other forms of enhancement also creates new product possibilities, by making the quest for self-improvement potentially limitless.
So this is not “just” a science book, although I’ve done my best to make the science as up-to-date and accurate as possible in a rapidly shifting field. It’s as much about politics as science, and in particular, about the political landscape in which Me Medicine flourishes. After the Supreme Court’s judgment in the Myriad Genetics case about private companies’ right to patent human genes, it’s especially timely for us to consider the social context and social contract behind modern biomedicine. That’s already happening: the notion of “We” is alive and well in modern biomedicine, epitomized in coalitions like the alliance of patients, medical professional organizations and civil liberties groups who brought the court case, whatever the outcome.
Me Medicine isn’t the only possibility; nor is it an inevitability. Whether we do choose to embrace personalized medicine, it should only be after a thorough review of the evidence and a careful analysis of the social landscape in which we’re making that choice, since the scientific evidence alone doesn’t dictate that you have to be ready to embrace the personalized paradigm. Although I’m glad of genuinely beneficial “Me Medicine” developments where there really is evidence for them, I’m sure you’ve guessed my choice: it’s “We” for me whenever I can.