Will Gathering Vast Troves of Information Really Lead To Better Health?

Scientist Michael Joyner rides his bike to work every day because he believes the exercise has more of an impact on people’s BMI than their genetic profile.
Richard Harris/NPR
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Richard Harris/NPR
The Mayo Clinic is building its future around high-tech approaches to research known as “precision medicine.” This involves gathering huge amounts of information from genetic tests, medical records and other data sources to ferret out unexpected ideas to advance health. But one longtime scientist at the Mayo Clinic isn’t playing along.
Dr. Michael Joyner is a skeptical voice in a sea of eager advocates. Joyner’s lab studies exercise. It is, fittingly enough, in a hospital building founded in the 1880s. While Mayo has built all sorts of new labs at its sprawling campus in Rochester, Minn., Joyner can conduct his work without glitzy DNA sequencers and other high-tech tools of precision medicine.
And it’s not simply that he’s an old-school devotee. He believes that the solution to our most pressing health problems lies in thinking about whole human beings, not breaking everything down to DNA sequences.
“The enthusiasm for this [precision medicine] is occurring in a country where life expectancy is actually falling,” he says as he walks through the old linoleum-tiled halls of St. Mary’s hospital.
That fact alone leads Joyner to ask whether the money being poured into high-tech medical research is really solving the nation’s stark health problems, like obesity, heart disease, high blood pressure, diabetes, Alzheimer’s disease and cancer.
Volunteer Greg Ruegsegger is outfitted with monitors, a catheter threaded into a vein and a mask to capture his breath in an experiment run by Joyner to measure human performance.
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Richard Harris/NPR
Joyner says there are certainly appropriate places to use this technology, and he doesn’t dispute the individual stories of success his colleagues tout. But he believes the best way to address the health concerns facing the nation is by studying — and treating — whole people, not by breaking the problems down to billions of genetic bits and pieces.
He practices what he preaches in both his personal life — his thorough exercise routine includes commuting by bicycle — and his physiology lab.
On the day I visited at the end of August, volunteer Greg Ruegsegger was outfitted with monitors, a catheter threaded into a vein and a mask to capture his breath. He would exercise to the point of exhaustion while scientists studied him. This is far more informative than any genetic test, Joyner says.
“People have looked at 3,000 elite endurance athletes — these are people who compete in the Tour de France and win Olympic medals in cross-country skiing and distance running — and [scientists] have been unable to find any genetic marker for superior performance.”
And when it comes to the health of ordinary people, Joyner talks about real-world studies, which show that walking or biking to work has four- or fivefold more influence on a person’s body mass index than that person’s genetic profile.
Joyner is focused on how the body’s systems work together during exercise, but the same interconnectedness applies to many diseases. That’s why cancer drugs that target one biological pathway generally don’t last long. Tumor cells simply find workarounds, exploiting the redundancies deeply embedded in biology. And that’s why Joyner has so little faith in science that keeps trying to focus down on smaller and smaller details.
“One of the things we have to ask ourselves when we get these big initiatives is, ‘What’s the definition of success?’ ” he says.
Scientific discoveries alone don’t do it for him. Doctors need to build effective treatments — and patients need to follow along. This is the promise of precision medicine in the long run, but Joyner has published articles (like this one) skeptical of the drive to collect vast piles of information, hoping to make sense of it later.
“Is this just going to be a biological Tower of Babel,” he asks, or will this information also lead to discoveries that translate beyond the laboratory and actually change public health for the better?
He doesn’t doubt that DNA sequencing and other tools of precision medicine are useful in specific instances, such as for diagnosing rare diseases. There are a few uses in cancer treatment, but so far there has been just one randomized study of patients assigned to treatments based on their tumor’s DNA profile, and it showed no advantage over traditional medical judgment.
This isn’t a popular point of view elsewhere at the Mayo Clinic, which is sinking hundreds of millions of dollars a year into precision medicine. The shiny new labs across campus seem a world apart from Joyner’s physiology lab.
After my conversation with Joyner, Mayo public affairs officers eagerly led me to a series of scientists there who disagree with him. One stop was at the Medical Genome Facility.
This room is chock-full of machines that cost many hundreds of thousands of dollars apiece. They can analyze DNA from a person, a tumor or even a single human cell. They can read out an entire genome, or just a subset, which is called the exome.
“I really do believe that understanding our genome is fundamental,” says Julie Cunningham, one of the facility’s three co-directors. Like other scientists at Mayo, she has had swaths of her own exome sequenced.
“I learned that by and large I’m really lucky, but I learned that I have two [genetic] variants that affect how I respond to particular drugs that are out there.” She had actually known that before for one of those drugs, “but now I know exactly why I have it and it’s potentially serious. That has to be good. There’s nothing wrong with that.”
Bad drug reactions are a serious medical problem, so in principle, a genome profile should help reduce that risk. The reality, though, is that the vast majority of genomic tests for drug sensitivity give ambiguous answers.
One of the most carefully studied examples involves the blood thinner warfarin. Four separate studies show that people who got genomic testing for this susceptibility did no better — or only marginally better — than patients whose dosages were determined by traditional strategies.
This lack of strong data is a problem for many areas of precision medicine.
“Although we think conceptually this is going to be of high value, and it will ultimately improve health care with better quality and lower cost, we have to prove that,” says Keith Stewart, a hematologist who directs Mayo’s Center for Individualized Medicine. “If it doesn’t all pan out the way we expect that’s OK. But I think there will be plenty of unexpected areas that we haven’t conceptualized yet, so I think it’s a very worthwhile investment on the taxpayers’ point of view.”
Whether precision medicine is going to be a boom or a bust, “right now it’s just speculation on both sides,” he says.
“It is somewhat inevitable that every person in this country will have their genome sequenced.” he adds.
Gianrico Farrugia, a gastroenterologist who is chief executive officer of the Mayo Clinic in Florida, agrees.
“What we’re beginning to see is that technology is invading and replacing traditional testing,” says Farrugia. For example, it is already used to determine treatments for lung cancer and diagnose rare diseases.
And, in any event,he says medicine is already moving aggressively into this new territory and there’s no going back. “That’s not only wrong,” he says, “it’s impossible.”
With the momentum now built up behind this enterprise, precision medicine will be judged like much of modern medicine: in hindsight, after it becomes entrenched in clinical practice.
You can contact Richard Harris via email.
Liberia Elects Soccer Star George Weah Its Next President

Liberian election officials said Thursday that soccer great George Weah, seen addressing an October campaign rally in Monrovia, had won the presidential runoff.
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Former international soccer star George Weah has won Liberia’s presidential runoff, the country’s election commission announced Thursday.
Weah won 61.5 percent of the vote, with more than 98 percent of ballots counted. He defeated the current vice president, Joseph Boakai.
This marks the first time in 70 years that Liberia will transfer power from one elected president to another. President Ellen Johnson Sirleaf, a Nobel Peace Prize winner and the first female head of state elected in Africa, is stepping down after two terms in office. She did not publicly endorse either candidate.
Weah had run unsuccessfully for president twice before. NPR’s Ofeibea Quist-Arcton reports that many Liberians identify with the 51-year-old footballer, who grew up poor and was not part of the social or political elite. Critics say Weah has limited experience and education.
The job won’t be easy, as Ofeibea explained on NPR’s Morning Edition:
“Liberians will tell you that Ellen Johnson Sirleaf, the outgoing president, has managed to cement peace, which is hugely important after back-to-back civil wars and then that Ebola outbreak three years ago in Liberia but that she has not done enough to make Liberians prosper, to pull them out of poverty and to give them jobs and deal with the economy. And also, there have been allegations of corruption. So whoever wins has huge challenges ahead of him.”
Soccer’s international governing body, FIFA, has described Weah as “a towering figure on the ’90s football scene.” He burst onto the world stage at Monaco under manager Arsene Wenger and went on to play at some of the sport’s pre-eminent clubs: Paris Saint-Germain, AC Milan, Chelsea and Manchester City. He is the only African player to have won FIFA’s World Player of the Year. He announced his retirement in August 2003.
Weah’s vice president will be Jewel Howard Taylor, ex-wife of former president Charles Taylor, who is serving a 50-year sentence for war crimes. Some are asking whether the former president will try to influence the country’s politics from prison.
“She’s my colleague in the Senate,” Weah told Deutsche Welle, explaining his choice of running mate. “She is a Liberian, capable, qualified, and Liberian people love her. I also believe in gender and equality, so I think having a woman as my vice president is a good thing.”
In Houston, Thousands Remain Displaced As Harvey Recovery Continues

Damaged furniture and personal belongings sit in front of a flooded home in September in Richwood, Texas. Several months after Hurricane Harvey hit southern Texas, residents are still navigating the long recovery process.
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Recovery efforts are ongoing in Houston from nearly $200 billion worth of damage caused by Hurricane Harvey in late August.
More than 100,000 homes were damaged in historic flooding, and thousands of residents are still living in hotels and rental housing while they wait for insurance checks.
Alma Roberts, who told Here & Now‘s Meghna Chakrabarti in October that her home of 14 years flooded for the third time in the storm, says she and her family are still renting an Airbnb. Nearly 11,300 families were still living in hotel rooms funded by the Federal Emergency Management Agency as of Dec. 15, according to The Texas Tribune.
Roberts says they plan to rebuild and expected the estimated six- to nine-month rebuilding process to begin soon. She tells Here & Now‘s Jeremy Hobson that she is concerned about the city’s infrastructure overall.
“I’m concerned about what’s the city doing. What’s going to happen the next time we have really bad weather and if it rains a lot?” Roberts says.
Even though Roberts had flood insurance, she says her family will still have to borrow some money to cover the cost of rebuilding. Nearly four out of five homes damaged in Harvey’s flooding were not covered by flood insurance, according to the Consumer Federation of America.
Houston’s chief recovery officer, Marvin Odum, the former head of Shell Oil Co. who helped the company recover in New Orleans after Hurricane Katrina, told Marketplace this week that Houston is essentially two cities right now: the part that was open for business two weeks after the storm and the areas that are still struggling to recover.
“The danger is that what gets lost in that picture are the vast number of people and pockets and neighborhoods that have been severely impacted by the storm,” he says. “And that’s where we need to maintain the focus of this recovery and that’s where we need to maintain a certain amount of public awareness as well so that we recognize there’s still a tremendous amount to be done.”
Earlier this month, Houston Mayor Sylvester Turner made a desperate plea for Congress to approve $61 billion in federal disaster assistance. So far, the state has received $11 billion in federal aid, which is significantly less than the $115 billion allocated after Hurricane Katrina and the $56 billion after Hurricane Sandy.
“Literally, there are thousands of people living in homes that need to be remediated,” Turner said. “And there are thousands of people who are still living in hotels. And the question is, where do they go when FEMA says, ‘No more’?”
Before the holiday break, the House passed an $81 billion disaster relief bill for Texas, Florida, California and Puerto Rico, but the Senate is not expected to consider the bill until next year. Odum says federal money is needed to prepare the city for future disasters.
“To do the same thing we’ve done before — which is just repair structures, put people back in their homes and basically sit there and wait for the next flood when it starts all over again — is absolutely untenable,” he told NPR in an interview this month. “Allocating the money now for the flood mitigation activities so that you can make these neighborhoods resilient, prevent the floodwaters from coming into the houses and then not have to pay for this kind of repair three years down the road makes perfect sense.”
Roberts says her family expects to spend an estimated $24,000 in rent while they wait for their home to be rebuilt. While they could find a cheaper option than Airbnb, Roberts says her family of five needs the amenities offered because they lost everything.
“Even if we found a place that was less expensive, we don’t have trash cans. We don’t have anything,” she says. “And this place did come with a bunch of fresh clean towels, blankets, sheets, you know, things that you take for granted. So for us to go and spend more time right now just didn’t make sense, especially when we’re trying to really count our pennies now to rebuild.”