U philosopher’s new book challenges the hype surrounding personalized medicine
By BRIAN MAFFLY
This article was originally published in @theU
he idea of “personalized medicine,” health care tailored to individuals’ genetics, has been oversold at the expense of less costly, yet more effective strategies for boosting health outcomes, according to a new book by University of Utah philosophy professor James Tabery.
The book titled “Tyranny of the Gene: Personalized medicine and its threat to public health,” which was released on Aug. 15 by Alfred A. Knopf, offers a scathing critique of the ongoing “revolution” in health care, which Tabery argues has added to the nation’s spiraling health care costs while failing to deliver on many of its promises.
In recent decades, biomedical research has been increasingly reoriented around DNA, with the aim of developing the right drug for the right patient at the right time guided by a person’s genetic profile.
Citing the experience of his own father, who succumbed to lung cancer in 2012, Tabery demonstrates how this approach is extremely costly, more likely to generate corporate profits than improving patient outcomes while diverting scarce resources from preventive measures.
“For most patients with most diseases, though, the lofty promises have failed to materialize,” Tabery wrote in a recent essay for The New York Times. “Even more dangerously, the hype has distracted from alternative approaches to health care that are better suited to improving health for all of us.”
Tabery’s book exposes the origins of personalized medicine as a marketing idea hatched by pharmaceutical executives, tracing its path from the Human Genome Project through its promotion by influential federal scientists, such as geneticist Francis Collins, the former head of the National Institutes of Health, biotech companies and politicians across the ideological spectrum, according to the publisher.
Meanwhile, the University of Utah itself has become a research leader in the field of human genetics, a fact that is not lost on Tabery. His arrival at the U in 2007 coincided with U geneticist Mario Capecchi being awarded the Nobel Prize and the university has grown into a magnet for federal grants supporting genetics research.
Tabery has since gained a reputation as an unflinching medical ethicist who has tackled controversial topics, such as forced sterilization, racial lynching and health-related conspiracy theories.
Tabery now serves as a member of the U’s Center for Health Ethics, Arts, and Humanities and co-directs the NIH-funded Utah Center for Excellence in Ethical, Legal and Social Implications of Genomics (ELSI) Research, or better known as UCEER.
For a deeper dive into Tabery’s book and the topics within it, U science writer Brian Maffly had a conversation with Tabery, which appears below.
How did you get interested in medical ethics? It seems to be the centerpiece of your career as a scholar. How did you get there?
My undergrad majors were both biology and philosophy and I was always fascinated about the intersection of those domains, whether it was science and society issues or medical ethics issues, where scientific breakthroughs and insights and advances impact the world for better and for worse.
The title of your book seems pretty provocative. When you talk about the “tyranny of the gene,” are we talking about political tyranny or biological tyranny or something in between?
It’s a little bit of all of the above. The basic point of the book is that with 20 years to reflect from the Human Genome Project to the present, we’ve got a good idea now of what information about genetics is going to do when it comes to making the world a healthier place. With a few exceptions, by and large, the genetic differences between us don’t have a huge impact on the things that are taking the biggest toll on society, things like cardiovascular disease and diabetes, obesity and COPD. The things that are taking the biggest toll on our health are things in our physical, social and chemical environment. It’s the air we breathe, it’s access to a healthy diet or not, systemic racism. Both health care practice and biomedical research are increasingly going all in on genetics—what I call the “genetic swerve” in medicine: genetic testing and genetic explanations and using genetic differences to guide prescribing drugs. The book sets out to understand why that is the case. Why are we swerving toward genetics despite the fact that we’ve got information now that suggests this isn’t the right route?
And what did you find?
The answer is multifactorial. First, it’s become technologically a whole lot easier to do these kind of genetics studies. There have been tremendous breakthroughs in sequencing and genotyping technologies over the last decade or two, which makes getting genetic data cheap and easy. It’s also politically less controversial than studying the environment. The environment, particularly in the United States, has become one of the cultural war issues. There’s one arm of the political spectrum that’s very skeptical of anything focused on the environment, whereas, Republicans and Democrats alike love the idea of investing in biomedical breakthroughs and cures.
Finally, it’s financially easier to make money on genetics than it is on fixing the environment. If a drug company can come up with an anti-platelet drug and they can say, “This is going be great for Black people to have less debilitating strokes,” you could make a bucket load of money with that. But trying to make the environment safer for Black people so that they’re not at increased risk of having those strokes—there’s not a whole lot of money to be made in that. That’s the tyrannical side that the book title is capturing.
It seems that the National Institutes of Health invest billions and billions into the type of genetic research that would support personalized medicine. Is it your argument those resources are being misallocated?
Yes. It would be better spent focusing on not just uncovering, but figuring out how to intervene in the environmental contributions to health. It is absolutely the case that, in the last 10 to 20 years, but particularly, after Dr. Collins took over the NIH in 2009, that it went increasingly towards focusing on the genetic contributions to health and genetic interventions and accumulating more and more genetic data.
A lot of that research money is winding up at the University of Utah.
It is. I’m very aware of the fact that this is where the rubber meets the road in terms of where the vision that I would like to see conflicts with how a place like the University of Utah has developed its name and reputation. I think the people doing that research at the U are good people and brilliant scientists who are trying to save lives. In many cases, they are folks who were touched by the diseases that they’re researching personally, and they want to make the world a healthier place. I don’t hold any grudges against them, but I do think medical genetics has become increasingly beholden to private money, pharmaceutical and investment dollars, which severely limits who it can reach and help.
What have you uncovered here as a potential way forward?
I see the National Children’s Study as being an exemplar of the kind of research that could have been done and can still be done. The University of Utah was integral to that national effort. That study was terminated in 2014, but there are plenty of excellent researchers at the University of Utah and elsewhere doing this work, whether they’re doing public health research, social-behavioral science, looking at complex things like environmental racism and people that are doing environmental toxicology—basically the people who are studying the environment, trying to figure out what makes it safer or more dangerous for all of us.
Maybe it’s harder to get research grants in those areas.
Yes. This is the tyranny. It is harder to get research grants. Often the amounts are smaller. It often doesn’t get as much attention out in the general public. What the genetics side has going for it is there’s this constant narrative of “We’re curing this, we’ve got a biomedical breakthrough for that, we’re going to save that child.” You can put a child that has a rare disease in front of a camera and say, “They would’ve been dead 10 years ago, but now because of this drug, we’re going to keep them alive.” Even if there are only 10 kids on earth with that disease, that’s a really powerful story.
I’m hearing a plug for the value of social and behavioral sciences.
Absolutely. And also for public health research. The people that are looking at lead in drinking water, the toxicology stuff. Oftentimes we take it for granted that smoking and lead paint are bad for our health. But decades ago, those things were real points of debate. Public and population health research changed the way we as a society approach those things, like getting DDT out of our environment. We can’t forget that or take it for granted.