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Data dreams, distrust, and democracy

Updated: Apr 20

Modern medicine is both dehumanized and dehumanizing. But that may be the goal. Medicine works best when it reduces individuals to their physiology rather than their individuality. We turn to humanism only when the science and technology don't work.


The technology is working better than ever. When Francis Collins was Director of the NIH, he recommended that every baby have their genome sequenced at birth. The results, he suggested, would guide a lifetime of precise, personalized health interventions. Eric Topol, Director of the Scripps Research Institute and a designated "Science Sage," , predicts that genomics, wearable and artificial intelligence will shape the future of medicine. He sees genomics as part of a digital transformation by which massive amounts of data will help keep patients healthy. People living in smart homes and wearing medical monitoring devices will feed a steady stream of data into the massive medical databases.


The role of doctors in these visions of the future of medicine is unclear. Topol imagines that the technology will somehow free up doctors to become more humanistic, more empathic. freed from the drudgery of tasks that they will never do as well as machines. Doctors' will add a human touch to the soulless and efficient AI machine.


That world is already here in some parts of health care today. The care of people with diabetes is, more and more, becoming automated. Wearable continuous glucose monitors provide information to wearable insulin pumps. The pumps then deliver an appropriate dose of insulin to keep the blood sugar in the recommended range. People with diabetes no longer need to be attentive to what they eat or variations in their exercise patterns. They no longer need to consult their doctors.


Brian Alexander’s brilliant book about a small-town hospital in Ohio offers a bleak vision of a different future. Most of the citizens of the town are described by an acronym coined by one of the local social service agencies: ALICE. It stands for asset-limited, income-constrained, employed. The working poor. Alexander describes the efforts of the hospital administration to keep the small hospital solvent. In doing so, they needed to concentrate on providing the services that were most lucrative. Those were not the services that the people of the town needed or could afford. It was a doomed rat race toward an end made inevitable because it each of the various interlocking entities that make the tattered patchwork of biomedical safety net operated in a rationally self-interested way.America had a jumble of ill-fitting building blocks: the doctoring industry, the hospital industry, the insurance industry, the drug industry, the device industry,” Alexander writes. Each had enough political influence to shape the system in ways that would direct the flow of enormous amounts of cash in its direction


So which will it be? A world of more precise and personalized medicine, giving each patient exactly what they need for based on analysis of their genome, their biochemical profile, their psychological vulnerabilities, and the unique social determinants that affect health and disease. Or one of machine-driven depersonalization for both doctors and patients with increasing patient dissatisfaction and physician burnout.


When Collins stepped down as head of NIH, he spoke worriedly about what he called the “tribalism of our current society.” That tribalism was exemplified by our national response to the COVID-19 pandemic. Our basic scientists performed wonderfully. They used the tools of genomics and informatics just as predicted to track the virus. They developed and manufactured safe and effective vaccines. But many people didn’t trust them. Collins acknowledged that the behavior of vaccine-refusers puzzled him. He suggested that we needed to do more research to understand how accurate medical information could be “overtaken by inaccurate conspiracies and false information on social media.” But we already have some such research. It hasn’t helped. The struggle to build trust and combat misinformation continues.


That bafflement is not just about the COVID-19 pandemic. The tension between the optimistic vision of the data-dreamers and the deep distrust of the doubters permeates every aspect of our democracy. It leads to two competing visions of what medicine can do and what doctors ought to be. The Collins-Topol view is the dominant one among leaders of the biomedical-industrial complex. They are allied with biotech companies to develop the tools and to do the research that will usher in a benevolent medical surveillance state.


Precision medicine will be psychologically different from any medicine we’ve known before. It will be stunningly rational and extraordinarily expensive. It will exacerbate disparities between the privileged few and the disenfranchised ALICEs facing ever growing barriers in the form of second-rate insurance, unaffordable co-pays, and choices between forgoing beneficial treatments or facing iatrogenic bankruptcy.


In the end, the choice between dream and nightmare is ours. To make it, we will have to balance the temptations of technology with the deeply humanistic impulses that have always been at the core of medicine.



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