Some recent health headlines have made stories sound so enticing they’re hard to resist: Are there genetic superheroes walking among us who can provide invaluable clues to preventing deadly diseases? What’s the secret of a big, long lost research study and could it have changed contemporary views on the risks of dietary fat? Should many older Americans who take statins, one of the most commonly prescribed medications, give them up in favor of a more costly therapy? And is there really a dazzling new way to test the blood for health markers?
Skeptics to the front, please. Somehow some very good, very savvy folks, again, are pushing health-related information that needs careful scrutiny or outright howls of complaint. I’ve written about the problems with health care information, and it gives me no pleasure to detail this quartet:
Let’s start with the tantalizing reports about research that seems to suggest that 13 people─yes, the stories are that specific─inherited genes that predisposed them to childhood diseases that kill most others who have them. Somehow, these “superheroes” have survived long into adulthood and not suffered the afflictions. Further, by studying such individuals more, medical and scientific researchers might, possibly, maybe could unlock invaluable secrets that could protect millions from an array of diseases, the stories suggested, reporting on research involving genetic sequencing of more than 600,000 people.
Wow. One big problem: Researchers actually can’t identify the 13, and their disease-fighting potential is all mostly hypothetical. The researchers were working with genetic data that was stripped of information that could identify patients─which is now a standard practice. It turns out that the news stories, intentionally or not, were promoting a project that needs people to volunteer their genetic information in the hopes of finding ways to fight diseases.
OK, this sounds like a possibly good cause. Medical science certainly is making great strides in genetic-related advances. But, curiously, the stories on this initiative and its related superhero study─while high on the possible outcomes and related efforts─failed to make the least mention of the big, challenging issues in patients allowing research on their directly identifiable genetic information.
There’s zero discussion on a participating partner, the controversial direct-to-consumer gene testing company 23andMe, which I’ve written about.
There are plenty of studies readily available on the topic of the ethics of gene research. I’ve written before about consumer gene testing. And, not that much time has passed since both scholarly and lay health readers started learning about the terrible exploitation of the genetic material of Henrietta Lacks. She was an African-American woman who struggled with poverty, then suffered through awful cervical cancer. Without her knowledge and consent, researchers at Johns Hopkins cultured her cancer cells, calling them the HeLa strain.
Lacks then inadvertently became “the godmother of virology and then biotech, benefiting practically anyone who’s ever taken a pill stronger than aspirin. Scientists have grown some 50 million metric tons of her cells. … HeLa has helped build thousands of careers, not to mention more than 60,000 scientific studies, with nearly 10 more being published every day, revealing the secrets of everything from aging and cancer to mosquito mating and the cellular effects of working in sewers.”
But Lacks and her family never saw any benefit from the commercialization of her genetic information. In fact, her privacy was wildly invaded; her children struggled with poverty and their mother’s unwitting legacy. Lacks also may have had her own return for researchers: They’re now grappling with the reality that her cells are so robust that many of them think the HeLa strain may have contaminated their studies.
The box in the basement
Another bit of research got media attention, likely because of its set up and not necessarily its findings. Here’s the premise: Could research, almost a half century old and not previously and fully disclosed, have changed or alter now physicians’ views on whether dietary fat is heart healthy or not? Why was this extensive study never written up and published? Was it somehow suppressed?
This is not that Woody Allen movie joke where a man is hurtled into the future and finds that steaks and cheeseburgers are part of a healthy diet. But the stories reporting on the lost data from the Minnesota Coronary Study (1968-73) suggested big revelations from a study on the diets of 9,000 study subjects at state mental and nursing homes.
That information had not surfaced until a National Institutes of Health researcher contacted the son of the late Minnesota investigator. The son rummaged around a lot in the basement of the family home to find the long lost study data. It’s unclear why researchers didn’t follow up their work on a large number of subjects and autopsy information on how they had died after eating in certain ways. The news reports suggest the study failed to conform with conventional wisdom at the time so the researchers didn’t write it up.
But would it provide definitive information on whether vegetable oils were healthier than butter, and, by extension, whether Americans ought to be so concerned about their cholesterol levels and consumption of saturated versus unsaturated fats? (This is a topic I’ve written about before).
As the New York Times says of the research, finally just published in a peer-reviewed, respected medical journal:
The results were a surprise. Participants who ate a diet low in saturated fat and enriched with corn oil reduced their cholesterol by an average of 14 percent, compared with a change of just 1 percent in the control group. But the low-saturated fat diet did not reduce mortality. In fact, the study found that the greater the drop in cholesterol, the higher the risk of death during the trial. The findings run counter to conventional dietary recommendations that advise a diet low in saturated fat to decrease heart risk. Current dietary guidelines call for Americans to replace saturated fat, which tends to raise cholesterol, with vegetable oils and other polyunsaturated fats, which lower cholesterol.
The paper, and other outlets that reported on this research, then proceeded to provide a robust array of experts to knock down or undercut the research, arguing it is flawed because of the study time, its reliance on autopsies as opposed to information about patients’ health while alive, and its focus on vegetable oils and butter. Who to believe? What’s it all mean? The problem with these stories is that after all the big buildup about the mysterious lost data, it really isn’t conclusive. Scratching your head? See the next item …
The good folks over at HealthNewsReview.org call it “whiplash,” their term to describe the confusion that consumers suffer when so many outlets report on health information in varied, conflicting, confused fashion.
Their latest example of this stems from reports about heart health, cholesterol, and medications out of the recent American College of Cardiology’s annual meeting in Chicago. It’s worth clicking over to the independent, nonprofit watchdog’s site to see the collection of news stories on a drug that 1 out of every 4 adults older in the U.S. takes, and whether “the entire population should be put on a statin, or statins are so toxic that nearly half the people who take them have muscle pain and other problems.”
As I’ve pointed out before, whether to take statins is a complicated issue that should be discussed fully with one’s physician. It isn’t helpful to already fretful readers when news organizations interpret research on the issue in wildly varying ways, especially when they don’t provide clarifying information or discuss conflicts of interest.
It was just a heartbeat ago that Elizabeth Holmes was the darling of many in the media. They saw her as the brilliant CEO of a secretive Silicon Valley start-up that promised to disrupt the administration of blood tests, a fundamental diagnostic procedure in health care that amounts by some estimates to a $75 billion annual business. As no less a carefully fact-checked magazine like the New Yorker reported , Holmes publicly claimed:
The company has developed blood tests that can help detect dozens of medical conditions, from high cholesterol to cancer, based on a drop or two of blood drawn with a pinprick from your finger. Theranos is working to make its testing available to several hospital systems and is in advanced discussions with the Cleveland Clinic. It has also opened centers in forty-one Walgreens pharmacies, with plans to open thousands more. If you show the pharmacist your I.D., your insurance card, and a doctor’s note, you can have your blood drawn right there. (The sample is then sent to a Theranos lab.) From that one sample, Holmes said, several tests can be run—all less expensive than standard blood tests, sometimes as much as ninety per cent below the rates that Medicare sets. A typical lab test for cholesterol can cost fifty dollars or more; the Theranos test at Walgreens costs two dollars and ninety-nine cents.
Flash-forward two years to the latest Theranos news: Federal officials are proposing to ban Holmes from the blood testing business for two years for failing to fix major shortcomings at labs in California considered critical to Theranos’ enterprise. The Wall Street Journal story details how, over a relatively rapid period, the company’s much-heralded plans─which at one point led investors to make it a $9 billion enterprise─unraveled, as its secretive processes, for example, produced questionable results in key blood tests that could affect patients’ health. (The New Yorker also has reported on the company’s travails.)
The book isn’t shut yet on Theranos. But for now the company is sounding less like a health care winner and more like an exemplar of the adage that starts, if it sounds too good to be true …