possible to detect genetic inputs to such treatment effects. An effect tied to a gene is very difficult to dismiss as an anecdote. Health providers, insurers, and investors won't dismiss them. These are genes, moreover, that will reduce rather than increase our health insurance premiumsâthey point to risks we can avoid rather than risks waiting to happen.
Genes are just a tip of an iceberg. They code for proteins that are part of a biological mechanism. Even without knowing the gene, clear descriptions of problems will in many cases enable physiologists, pharmacologists, and others to pinpoint the larger mechanism producing an outcome, making it possible to state that X causes Yâthe cholera bacillus causes cholera or SSRIs can causally trigger a suicide. 14 It is in the laboratory rather than in a clinical trial we ultimately establish causesâin Koch's laboratory rather than Snow's epidemiology. But where Snow saw his epidemiology as paving the way for a hunt for causes, the exclusive turn to clinical trials in medicine today stops doctors and others from any effort to hunt for the mechanisms that make sense of the trial data.
There are new forces, like the Internet, emerging that will either swing us back toward Koch or entrench a mindless turn to trials and guidelines. Seeking answers to health issues is now the second commonest reason to access the web. Many companies are gearing up to create electronic medical records, into which many of these Internet sites feedâsites offering to tell us for instance whether problems have been reported on our treatment. But all of the sites we might visit are at present linked to evidence-based medicine and current guidelines. The promise of companies providing these new technologies to healthcare organizations is that they will alert managers and doctors when prescribing if an electronic record strays from guidelines. This is sold as offering the organization a chance to ensure doctors give the best in medical care but in fact, unless medicine is driven by patients rather than guidelines, such electronic Big Brothers risk obliterating our individuality comprehensively.
This top-down approach aims at replacing individual judgments with the wisdom of experts supposedly relying only on the best available evidence. In contrast, the reporting model outlined above offers a bottom-up approach. It supplements the wisdom of experts with the wisdom of individual patients and doctors. This approach fits well with the ability of Google or social media like Facebook to track events.
If we are open to finding out what is really going on, we can get people not just to report events but to outline the impact of these events on their livesâthe son who went off the rails on a stimulant and dropped out of college, the end of a marriage because of sexual dysfunction when taking an antihypertensive, the car crash because of temporary lack of coordination while on the heart drug amiodarone or many other drugs, the investigation for dementia because of cognitive difficulties on statins, the cost of a jail term following murder while on the smoking-cessation drug varenicline. We are aware these things can happen but have no idea how often they might be happening. We have no idea what the true costs of treatment might be, although we have hints that the cost of managing treatment-induced problems is more than the entire drugs budget. 15
We are at a fateful moment. The Internet is awash with sites taking a top-down approach. None of these sites are ever likely to discover anything. Many of them are likely to aggravate our problems while promising to empower us. They coexist with and indeed all but entrench the greatest failure of the free market on the planetâno where else is there so much important data pertinent to economic well-being that remains uncollected and unused. A bottom-up approach in contrast would offer a market-based solution to a growing market failure and in so