Francis Collins, Director of the United States’ National Institutes of Health, guides us through the upheaval in his new book The Language of Life – DNA and the Revolution in Personalized Medicine. As he puts it, “We are on the leading edge of a true revolution in medicine, one that promises to transform the traditional ‘one size fits all’ approach into a much more powerful strategy that considers each individual as unique and as having special characteristics that should guide an approach to staying healthy. But you have to be ready to embrace this new world.”
This seismic shift toward genetic personalized medicine promises to give each of us insight into our deepest personal identity – our genetic selves – and let us sip the elixir of life in the form of individually tailored testing and drugs. But can we really believe these promises?
Genetic personalized medicine isn’t the only important new development. Commercial ventures like private blood banks play up the uniqueness of your baby’s umbilical-cord blood. Enhancement technologies like deep-brain stimulation – “Botox for the brain” – promote the idea that you have a duty to be the best “me” possible. In fact, modern biotechnology is increasingly about “me” medicine, the “brand” being individual patients’ supposed distinctiveness.
But all these technologies remain more hype than reality – and sometimes dangerous hype. Personalized genetic testing is now under investigation by the US Congress and the US Food and Drug Administration for misleading customers into thinking we know much more than we actually do about the link between particular genes and the probability of developing particular illnesses.
Likewise, privately banked cord blood has been shown to be clinically less effective than publicly banked and pooled blood, leading to two skeptical reports from leading obstetricians’ associations warning against its routine collection at childbirth. And enhancement technologies, supposedly enabling us to become “trans-human,” have attracted much publicity, but remain largely speculative.
Credit for the greatest advances in human health and longevity over the last two centuries should go to “we” medicine, not “me” medicine. Public-health and sanitation programs, polio and smallpox vaccinations, and tuberculosis screening in schools and workplaces have contributed the most to improved health in the Western world and beyond.
But when parents buy into scares linking childhood vaccines to autism, when media pundits scoff at public-health measures to prevent swine flu from spreading, or when a UK researcher claims that “the scourge of aging is worse than smallpox,” vaccination, epidemic prevention, and screening fall by the wayside. Conversely, there is an unchallenged and unthinking preference for “me” medicine, partly because it pushes all the right buttons in our psyches, the ones marked “choice,” “individuality” and “special.”
The new biomedicine was originally funded and promoted as a public-health initiative that would benefit all of us. Hopes for widespread cures were high when the Human Genome Project – financed by a private medical charity, a UK research council, and the US National Institutes of Health – was completed ten years ago.
Instead, one-fifth of the human genome is now subject to private patents, meaning that patients can’t afford tests for genes that cause cancer and researchers can’t make progress if another team owns the patents on the genes that they want to study. What went wrong?
Part of the answer has to do with the genetic mystique: the notion that I simply am my genes, and that’s why I’m unique. The genetic mystique plays on the individualism of Western culture and seems to give it a scientific basis. There are also powerful commercial interests at stake, meaning that research frequently concentrates on genetic links to diseases whose diagnosis and treatment will produce the greatest profit, rather than the greatest reduction in global mortality.
Some genetically personalized treatments may well be signs of progress, such as pharmacogenetics, which promises drug regimes tailored to the patient’s own genome. If this new technology works, it could lessen the direst side-effects of chemotherapy for cancer care: oncologists would no longer have to prescribe one-size-fits-all regimes if patients who are genetically more receptive to the drug could be differentiated and given lighter regimes.
But the high cost of developing new drugs means that pharmaceutical companies need substantial patient markets to make their investments profitable. Will minority ethnic groups miss out?
For a while it looked as if the reverse would happen, with niche markets in pharmacogenetics targeting ethnic minorities. Race-based medicine hit the scene in 2005 when the FDA approved BiDil, the first drug to treat a specific racial group – African-Americans suffering from heart failure. But there was no real clinical evidence that the drug worked better in African-Americans, and it has been withdrawn from the market.
Nevertheless, major advances like the Human Genome Project have certainly geneticized medicine: there is a growing popular tendency to define all conditions as genetically determined. And that means that public-health measures are likely to be neglected in favor of individual genetic scans or personalized genetic-testing services. Genetic tests, if properly administered, can save lives, but they also tend to create a feeling that the responsibility for your health rests with you, the individual patient.
The genetic mystique, the legally doubtful view that we own our bodies, and the widening reach of the market in our lives lead many to believe that “me” medicine is the only game in town. When health care is paid for by individuals or their employers, “me” medicine becomes a natural outlook.
But, like the drunk who looks for his lost keys only under the streetlight, biomedicine is in danger of concentrating only where the glare is brightest – not on the most effective health interventions, but on the most personalized and profitable, which nowadays go hand-in-hand.