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Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health
A revelatory account of how power, politics, and greed have placed the unfulfilled promise of personalized medicine at the center of American medicine
The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine—the tailoring of health care to our genomes—have promised to usher in a new era of miracle cures. Advocates of this gene-guided health-care practice foresee a future where skyrocketing costs can be curbed by customization and unjust disparities are vanquished by biomedical breakthroughs. Progress, however, has come slowly, and with a price too high for the average citizen.
In Tyranny of the Gene, James Tabery exposes the origin story of personalized medicine—essentially a marketing idea dreamed up by pharmaceutical executives—and traces its path from the Human Genome Project to the present, revealing how politicians, influential federal scientists, biotech companies, and drug giants all rallied behind the genetic hype. The result is a medical revolution that privileges the few at the expense of health care that benefits us all.
Now American health care, driven by the commercialization of biomedical research, is shifting focus away from the study of the social and environmental determinants of health, such as access to fresh and nutritious food, exposure to toxic chemicals, and stress caused by financial insecurity. Instead, it is increasingly investing in “miracle pills” for leukemia that would bankrupt most users, genetic studies of minoritized populations that ignore structural racism and walk dangerously close to eugenic conclusions, and oncology centers that advertise the perfect gene-drug match, igniting a patient’s hope, and often dashing it later.Tyranny of the Gene sounds a warning cry about the current trajectory of health care and charts a path to a more equitable alternative.
The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine—the tailoring of health care to our genomes—have promised to usher in a new era of miracle cures. Advocates of this gene-guided health-care practice foresee a future where skyrocketing costs can be curbed by customization and unjust disparities are vanquished by biomedical breakthroughs. Progress, however, has come slowly, and with a price too high for the average citizen.
In Tyranny of the Gene, James Tabery exposes the origin story of personalized medicine—essentially a marketing idea dreamed up by pharmaceutical executives—and traces its path from the Human Genome Project to the present, revealing how politicians, influential federal scientists, biotech companies, and drug giants all rallied behind the genetic hype. The result is a medical revolution that privileges the few at the expense of health care that benefits us all.
Now American health care, driven by the commercialization of biomedical research, is shifting focus away from the study of the social and environmental determinants of health, such as access to fresh and nutritious food, exposure to toxic chemicals, and stress caused by financial insecurity. Instead, it is increasingly investing in “miracle pills” for leukemia that would bankrupt most users, genetic studies of minoritized populations that ignore structural racism and walk dangerously close to eugenic conclusions, and oncology centers that advertise the perfect gene-drug match, igniting a patient’s hope, and often dashing it later.Tyranny of the Gene sounds a warning cry about the current trajectory of health care and charts a path to a more equitable alternative.
458 pages, Kindle Edition
Published August 15, 2023
27 people are currently reading
325 people want to read
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Displaying 1 - 18 of 18 reviews
November 21, 2023
This book is a fascinating description of the machinations at the highest levels of the National Institutes of Health (NIH) to sell the US legislature and the public on the pending promise of personalized medicine, which touts "the right treatment for the right person at the right time." The push to prioritize personalized medicine is based on the notion that genes are the primary drivers of most medical maladies, even though GWAS (genome wide association study) investigations typically find trivial effects of genes on medical outcomes. Environmental contributors to medical problems have been downplayed, despite substantial evidence that environmental toxins (e.g., lead paint, water and air pollution) are major influences on disease. This book is a "must read" for anyone interested in how NIH leaders can steer research priorities -- and convince the US Congress that their priorities are crucial -- even when those priorities ignore present dangers to public health.
November 14, 2023
This book is exhibit A in why we should keep philosophers of "medical ethics" completely sidelined from major decision-making in science policy. Not only is Tyranny of the Gene a reckless (and largely brainless) attack on a groundbreaking paradigm (anti-progress), but also a bizarre assault on our engine of innovation (investment in clinical development). Intellectualized know-nothingism in service of base partisan goals belongs in the dustbin of history. Fortunately, the scientific era hailed by true innovations like next-generation sequencing (NGS) are essentially an unstoppable force.
This book embodies the same myopia of Paul Krugman's 1998 internet quote: "The growth of the Internet will slow drastically, as the flaw in 'Metcalfe's law' becomes apparent: most people have nothing to say to each other!" Many of the claims tendered by Tabery will age just as poorly.
This book embodies the same myopia of Paul Krugman's 1998 internet quote: "The growth of the Internet will slow drastically, as the flaw in 'Metcalfe's law' becomes apparent: most people have nothing to say to each other!" Many of the claims tendered by Tabery will age just as poorly.
October 12, 2023
Well-researched, well-written, powerful, and impactful
March 13, 2025
In Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health, James Tabery weaves a fascinating tale of how the concept of “personalized medicine” was born from two advances in science: the discovery of the structure of DNA in 1953 by Francis Crick and James Watson, and then fifty years later, the decoding of the entire human genome in 2003. (A side note here. I was surprised and disappointed that author Tabery didn’t think to include the critical work of Rosalind Franklin in X-ray crystallography that enabled Crick and Watson to model the double helix structure of DNA. An excellent biography that does full justice to Rosalind Franklin is The Secret of Life: Rosalind Franklin, James Watson, Francis Crick, and the Discovery of DNA's Double Helix.)
Once it is possible to see which genes play roles in various diseases and conditions, it is an intuitive step to imagine the development of medications and treatments at the gene level, hence, “personalized medicine,” which inevitably spawned marketing language for the occasion, such as “right treatment, right patient, right time.” But despite the tempting possibilities suggested by this concept, Tabery’s narrative quickly becomes a cautionary tale. In the chapter titled DNA’s “Dirty Little Secret,” critics among various medicine-related professions judged personalized medicine to be “misleading, offensive, and overhyped.”
The emerging picture that personalized medicine turned “doctors into boutique tailors who fabricated bespoke pharmaceuticals specially crafted for each unique individual” is misleading, since that isn’t “at all how pharmacogenomics in fact worked.” It was offensive “to physicians everywhere when champions of personalized medicine came along and suggested that health-care providers were stuck in an old-fashioned mindset unless they were tracking genes.” And it was overhyped when “leading voices in the field of pharmacogenomics stepped forward and expressed concerns about how advocates of personalized medicine were over-selling expectations regarding what the science could reasonably deliver.”
One notable lament of Tabery’s is how the outcomes of the Human Genome Project have eclipsed investigations into the significant impact social and environmental factors can have on human health. The wow-factor of personalized medicine (eventually altered to “precision medicine’) had immediate appeal to American business and to the politics industry, and when money and politics become involved, it’s inevitable for two (or more) approaches to vie for the same resources.
Given that the promises of personalized medicine made two decades ago have remained largely unfulfilled, Tabery concludes with a compelling argument to give more—or at least equal—attention and resources to his favored approach: “The way to begin addressing those population health problems is to understand them, and the best way to understand them is by studying the actual determinants of health in our environments.”
Once it is possible to see which genes play roles in various diseases and conditions, it is an intuitive step to imagine the development of medications and treatments at the gene level, hence, “personalized medicine,” which inevitably spawned marketing language for the occasion, such as “right treatment, right patient, right time.” But despite the tempting possibilities suggested by this concept, Tabery’s narrative quickly becomes a cautionary tale. In the chapter titled DNA’s “Dirty Little Secret,” critics among various medicine-related professions judged personalized medicine to be “misleading, offensive, and overhyped.”
The emerging picture that personalized medicine turned “doctors into boutique tailors who fabricated bespoke pharmaceuticals specially crafted for each unique individual” is misleading, since that isn’t “at all how pharmacogenomics in fact worked.” It was offensive “to physicians everywhere when champions of personalized medicine came along and suggested that health-care providers were stuck in an old-fashioned mindset unless they were tracking genes.” And it was overhyped when “leading voices in the field of pharmacogenomics stepped forward and expressed concerns about how advocates of personalized medicine were over-selling expectations regarding what the science could reasonably deliver.”
One notable lament of Tabery’s is how the outcomes of the Human Genome Project have eclipsed investigations into the significant impact social and environmental factors can have on human health. The wow-factor of personalized medicine (eventually altered to “precision medicine’) had immediate appeal to American business and to the politics industry, and when money and politics become involved, it’s inevitable for two (or more) approaches to vie for the same resources.
Given that the promises of personalized medicine made two decades ago have remained largely unfulfilled, Tabery concludes with a compelling argument to give more—or at least equal—attention and resources to his favored approach: “The way to begin addressing those population health problems is to understand them, and the best way to understand them is by studying the actual determinants of health in our environments.”
November 15, 2024
Love me some science tea
July 8, 2025
I wanted to challenge my own beliefs and support for precision medicine. Some valid points were raised but nothing truly revolutionary. The “cons” are outweighed by the very clear benefits.
October 23, 2023
3.5
Interesting topic but pretty dense read.
Interesting topic but pretty dense read.
June 19, 2025
Interesting and important. Could have had better structure as a narrative.
December 10, 2023
I found this book disappointing. There is a very important conversation to be had about whether many so-called 'precision-medicine' diagnostics and therapeutics are worth their very high costs. The author says little about how these costs should be weighed-up against competing priorities, whether they are conventionally 'medical' or in any other area of society.
Instead, most of the book narrates the minutiae of early 2000s power struggles at the NIH. The author has a clear grudge against Francis Collins and his vision of population-scale genetic cohort studies. This goes on for hundreds of pages, but I would think that after a chapter or two most readers have got the point.
He argues that studies of people's living environment have been overlooked in favour of ‘hypothesis-free’ genetic cohort studies, but never outlines what he thinks the most important environmental questions are or how studies should be designed to answer them.
Genetics is a very powerful tool for understanding the causes of many complex diseases, not just rare congenital syndromes or cancer. The industrialisation of genetic sequencing has led to major improvements in public health programs, as we all saw during the pandemic. Perhaps companies like Illumina, who provide these services, have had too much influence on the priorities of major scientific programs, but this is well known to anyone in the field and this book adds little. There is also very little in this book from patients, and almost nothing from practising scientists, clinicians or government regulators who have to weigh up the effectiveness of targeted therapies in the real world.
The section on ancient DNA was hostile and poorly researched, and seems only to have been included to try to smear the science of genetics with racist guilt-by-association. The fact that scientists are able to extract minute quantities of DNA from bones which have been buried for two million years is almost miraculous, and would have seemed totally implausible only a few decades ago. It's also barely relevant to the question of personalised medicine at all, except that the development of the field has been a fortunate side benefit of cheaper and cheaper genetic sequencing.
The author just dismisses the entire field of palaeogenomics because he doesn't like (his idea of) the political implications of some of its findings. He charitably admits that its practitioners aren't engaged in an 'intentional effort to make contemporary archaeology more conducive to Nazi sympathies' - nevertheless, a few pages later he laments their findings having interfered with 'all the scientific and moral progress that archaeology had made over the previous five decades.'
He doesn't seem to have sought the opinions on anyone working in the field, and this section contains obvious errors of fact. For example, the statement that 'modern humans and Neanderthals share roughly 2 percent of their genetic material' confuses identity-by-descent and identity-by-state - the human and Neanderthal genomes are in fact over 99% identical. Reading this section, I wondered if the author also rejects findings from radiocarbon dating, pollen isotope analysis and other modern tools, which have also led to new understanding about human prehistory and led archaeologists to revise their models of the past?
So in the end this book had little to offer. What it does say about the social implications of genetics and palaeogenomics in particular is poorly informed and shot through with bad faith - Kathryn Paige Harden and David Reich have written much more interestingly on this. The book also doesn't say much about how to assess the value of large public investments in genomics and targeted therapy. Every health system in the world grapples with this implicitly or explicitly, but we hear nothing about what the author thinks of their approaches. For much better books on this topic look for Ben Goldacre and Vinay Prasad.
Instead, most of the book narrates the minutiae of early 2000s power struggles at the NIH. The author has a clear grudge against Francis Collins and his vision of population-scale genetic cohort studies. This goes on for hundreds of pages, but I would think that after a chapter or two most readers have got the point.
He argues that studies of people's living environment have been overlooked in favour of ‘hypothesis-free’ genetic cohort studies, but never outlines what he thinks the most important environmental questions are or how studies should be designed to answer them.
Genetics is a very powerful tool for understanding the causes of many complex diseases, not just rare congenital syndromes or cancer. The industrialisation of genetic sequencing has led to major improvements in public health programs, as we all saw during the pandemic. Perhaps companies like Illumina, who provide these services, have had too much influence on the priorities of major scientific programs, but this is well known to anyone in the field and this book adds little. There is also very little in this book from patients, and almost nothing from practising scientists, clinicians or government regulators who have to weigh up the effectiveness of targeted therapies in the real world.
The section on ancient DNA was hostile and poorly researched, and seems only to have been included to try to smear the science of genetics with racist guilt-by-association. The fact that scientists are able to extract minute quantities of DNA from bones which have been buried for two million years is almost miraculous, and would have seemed totally implausible only a few decades ago. It's also barely relevant to the question of personalised medicine at all, except that the development of the field has been a fortunate side benefit of cheaper and cheaper genetic sequencing.
The author just dismisses the entire field of palaeogenomics because he doesn't like (his idea of) the political implications of some of its findings. He charitably admits that its practitioners aren't engaged in an 'intentional effort to make contemporary archaeology more conducive to Nazi sympathies' - nevertheless, a few pages later he laments their findings having interfered with 'all the scientific and moral progress that archaeology had made over the previous five decades.'
He doesn't seem to have sought the opinions on anyone working in the field, and this section contains obvious errors of fact. For example, the statement that 'modern humans and Neanderthals share roughly 2 percent of their genetic material' confuses identity-by-descent and identity-by-state - the human and Neanderthal genomes are in fact over 99% identical. Reading this section, I wondered if the author also rejects findings from radiocarbon dating, pollen isotope analysis and other modern tools, which have also led to new understanding about human prehistory and led archaeologists to revise their models of the past?
So in the end this book had little to offer. What it does say about the social implications of genetics and palaeogenomics in particular is poorly informed and shot through with bad faith - Kathryn Paige Harden and David Reich have written much more interestingly on this. The book also doesn't say much about how to assess the value of large public investments in genomics and targeted therapy. Every health system in the world grapples with this implicitly or explicitly, but we hear nothing about what the author thinks of their approaches. For much better books on this topic look for Ben Goldacre and Vinay Prasad.
January 29, 2024
Who is this book for? =
Anyone who wants to learn about the history of precision/personalized medicine - using genetic markers to tailor treatments - especially in the United States context. This book details the history of the science and the funding efforts in government and private industry. Written with lots of personal interviews and quotes, this book is an engaging read. Tabery turns a critical lens on precision/personalized medicine efforts, recognizing the importance of genetics generally but raising concerns about its newfound dominance in medicine to the detriment of environmental studies.
Summary =
This book is a history of the science and funding of genetics-based medicine. This book argues that the increased focus over the last 30-40 years on genetic, as opposed to environmental, causes of diseases is, to put it simply, not good. Personalized/precision medicine has made huge promises that it has largely failed to deliver on thus far. These highly specific solutions for specific variants of diseases will only work for a small number of people and at an extremely high cost. Environmental solutions - clean air and water, safer disposal of toxic waste, increased access to fresh foods, etc. - cost the same or less and work for everyone.
Importantly, this book is NOT anti-genetics. Instead, it calls for a more balanced approach to treating diseases. Genetics should play an important role in medicine. But hormones, the gut microbiome, diet, lifestyle, social influences, and environmental influences should play an equally important role in medicine.
So, while the genetics revolution has produced some truly incredible results, Tabery gives us the important counterpoint to the hype train of personalized/precision medicine and urges us to temper our expectations and give equal (or maybe even greater) funding towards studying the environmental causes of diseases.
Anyone who wants to learn about the history of precision/personalized medicine - using genetic markers to tailor treatments - especially in the United States context. This book details the history of the science and the funding efforts in government and private industry. Written with lots of personal interviews and quotes, this book is an engaging read. Tabery turns a critical lens on precision/personalized medicine efforts, recognizing the importance of genetics generally but raising concerns about its newfound dominance in medicine to the detriment of environmental studies.
Summary =
This book is a history of the science and funding of genetics-based medicine. This book argues that the increased focus over the last 30-40 years on genetic, as opposed to environmental, causes of diseases is, to put it simply, not good. Personalized/precision medicine has made huge promises that it has largely failed to deliver on thus far. These highly specific solutions for specific variants of diseases will only work for a small number of people and at an extremely high cost. Environmental solutions - clean air and water, safer disposal of toxic waste, increased access to fresh foods, etc. - cost the same or less and work for everyone.
Importantly, this book is NOT anti-genetics. Instead, it calls for a more balanced approach to treating diseases. Genetics should play an important role in medicine. But hormones, the gut microbiome, diet, lifestyle, social influences, and environmental influences should play an equally important role in medicine.
So, while the genetics revolution has produced some truly incredible results, Tabery gives us the important counterpoint to the hype train of personalized/precision medicine and urges us to temper our expectations and give equal (or maybe even greater) funding towards studying the environmental causes of diseases.
February 21, 2024
Quick thoughts:
Really insightful book that, as a geneticist, was helpful in readjusting my opinion around genetics and the environment. In particular, the story of the Pima and diabetes research really hit home.
The book had too much US history/politics than I cared to read about, although it was interesting to learn more about some of the figures I've always though of positively, like Francis Collins.
The key takeaway I got from the book is that we shouldn't overlook the environment in the hope that genomics will solve all our problems. This is something I needed to have reaffirmed.
Still, I think it was too critical of genomics. Yes, it's overhyped as things stand now, but in the future (how far into the future depends on us), if we employ genomics inclusively and thoughtfully, it really will live up to the hype.
Really insightful book that, as a geneticist, was helpful in readjusting my opinion around genetics and the environment. In particular, the story of the Pima and diabetes research really hit home.
The book had too much US history/politics than I cared to read about, although it was interesting to learn more about some of the figures I've always though of positively, like Francis Collins.
The key takeaway I got from the book is that we shouldn't overlook the environment in the hope that genomics will solve all our problems. This is something I needed to have reaffirmed.
Still, I think it was too critical of genomics. Yes, it's overhyped as things stand now, but in the future (how far into the future depends on us), if we employ genomics inclusively and thoughtfully, it really will live up to the hype.
November 21, 2023
Brilliant storytelling uncovers the ways that pharmaceutical companies, politicians, and biomedical researchers are hyping the promise of genomic medicine, all while the actual science of genetics is displaying the staggering limits of that approach to healthcare. The book interweaves figures like FDR, Rachel Carson, Francis Collins, and Barack Obama to reveal how America is embarking on a "genetic swerve" in medicine that risks bankrupting healthcare and making us all sicker in the process.
November 23, 2023
As a geneticist, it's refreshing to read such an accurate portrayal of contemporary genomic medicine. The author does a nice job of capturing all that ails the science--the outrageous costs of treatment, the limited efficacy, the hype. I definitely recommend it for any patients (or their families) who find themselves in the world of "targeted therapies", or "personalized medicine", or "precision medicine".
February 19, 2024
This is a valuable counterweight to all the hype about personalized medicine. It's not a perfect book but it does bring to light many important concerns with the massive government, regulatory-apparatus, and industry investment in genomics and genomics-driven pharma.
The book takes a narrow perspective through the history of genetic testing, public health surveys and their politics, the genetic testing industry, and the pharmaceutical industry. The author tries to illustrate each sociological or financial fact with a human story as well. It is quite a complex tapestry to weave together, and he is mostly successful in doing so.
From my point of view as a veteran of both academic genetics research and industry genomics development, his conclusions are interesting. Broadly speaking, historically, environmental factors have always been the biggest causes of specific diseases, and there's no evidence that suddenly genetic information will change that. But we invest so much in genomics because (a) it feeds into the American individualist ethos rather than crediting communal factors; (b) it's TECHNOLOGY that can be sold for profit, not withdrawal of known pollutants that are profitable; (c) it draws from racist concepts of differentiation of health outcomes; (d) the personality and political power of Francis Collins. Tabery builds these conclusions from a number of arguments, based in historical primary source reading and interviews; and secondary sources to interpret the scientific data. As a scientist I did wish there were more detail in the quantitative failings of the personalized medicine industry -- I know that that detail exists! The historical information was convincing.
The book takes a narrow perspective through the history of genetic testing, public health surveys and their politics, the genetic testing industry, and the pharmaceutical industry. The author tries to illustrate each sociological or financial fact with a human story as well. It is quite a complex tapestry to weave together, and he is mostly successful in doing so.
From my point of view as a veteran of both academic genetics research and industry genomics development, his conclusions are interesting. Broadly speaking, historically, environmental factors have always been the biggest causes of specific diseases, and there's no evidence that suddenly genetic information will change that. But we invest so much in genomics because (a) it feeds into the American individualist ethos rather than crediting communal factors; (b) it's TECHNOLOGY that can be sold for profit, not withdrawal of known pollutants that are profitable; (c) it draws from racist concepts of differentiation of health outcomes; (d) the personality and political power of Francis Collins. Tabery builds these conclusions from a number of arguments, based in historical primary source reading and interviews; and secondary sources to interpret the scientific data. As a scientist I did wish there were more detail in the quantitative failings of the personalized medicine industry -- I know that that detail exists! The historical information was convincing.
May 7, 2025
I think this book could easily be required reading in a science or technology ethics class. The conversation about studies being shaped to fit the people in powers personal research interest is happening across industries. I only wish that he had gotten more into how the rise of personalized medicine is tied to the rise in race medicine.
June 3, 2024
Couldn't finish this audiobook. Bailed at 19%. Got the gist of it -- personalized genetic medicine is costly and distracts from environmental causes of disease. That's an important premise but I got it and am moving on.
December 27, 2023
Fascinating and depressing book! I want to read more on these topics. I highlighted several areas to look into…
Note: this book had a lot of references, the book part went to page 280.
Note: this book had a lot of references, the book part went to page 280.
December 31, 2023
Review to come
Displaying 1 - 18 of 18 reviews