This story is a marketing coup for Massachusetts General Hospital. Its relevance to most cancer patients, however, is unclear.
In certain patients with certain types of cancer, the consensus is that genetic testing can offer useful information. However, there is currently no consensus that genetic profiling of cancers should be recommended for every patient. What’s more, routinely testing every cancer patient could cost the nation about $3 billion a year. Questions about the relative value of the Massachusetts General Hospital policy were left out of this story.
Given that the clinical usefulness of routinely testing patients is uncertain, ABC News has prominently celebrated a policy change that other cancer experts may see more as grandstanding than as a scientifically justifiable addition to the workups of cancer patients.
This story failed to mention costs. Other news reports say Massachusetts General will charge about $2,000 for their testing… and that insurance companies may not pay for the tests until there is evidence that they actually improve outcomes for patients.
Since about 1.5 million people in the United States are expected to be diagnosed with cancer this year, routinely doing genetic profiles of all tumors could add about $3 billion dollars to the nation’s health care bill… without necessarily improving the survival or quality of life of cancer patients.
As mentioned before, the story includes claims that genetic profiling will improve treatment selection for cancer patients. In reality, in many cases the results of profiling will be ambiguous or will not alter the choice of treatments.
While this story featured an emotional anecdote of a patient who was successfully treated after genetic profiling suggested her cancer would be susceptible to an experimental drug, many other patients are likely to be told that the test results offered no new or useful information… or that the profiling indicates that treatment is unlikely to be successful.
Notably, this story failed to mention one of the key potential benefits of genetic profiling of tumors: the chance to avoid the harms of treatment that is unlikely to be effective. Rather than offering a miraculous cure, profiling can offer some patients the opportunity to spend more of their remaining days at home, rather than enduring futile treatment.
There is no discussion of potential downsides to routine genetic screening of cancer tumors in this story.
Besides the cost of testing, the results of the limited set of genetic tests being used at Massachusetts General may miss important abnormalities, either because that variation was not included in the test panel, the biopsy used for testing didn’t contain cells that had an important mutation present elsewhere in the tumor, or because the passage of time and/or the effects of treatment allowed the tumor to develop new mutations.
The reporter allowed a doctor to boldly claim that identifying genetic flaws “will allow us to match the tumor to effective drugs.” But the story ignores the reality that in many, if not most, cancer cases, genetic profiling will not make an important difference in treatment.
While there are examples of genetic profiling altering the course of treatment, case reports of patients who did well after such testing, and certain cancers where profiling is becoming a routine part of a patient workup, the effect of routinely testing every tumor for a selected list of genetic abnormalities is unknown.
Research articles on this topic point out that many of the genetic variations seen in tumors are just background noise that offer no useful information. Also, tumors can mutate over time, meaning a test result at one point in the course of the disease may not be relevant later.
The story concluded with this line: ".. with more extensive genetic testing, more patients may find their wildest dreams may not be so wild after all." Such cheerleading promotion of more genetic testing, without any balancing information about potential harms and costs, is disease mongering.
Only doctors from Massachusetts General were interviewed. There was no mention of any potential conflicts of interest they may or may not have.
The story might have been much different if the reporter had sought out other experts. For instance, in March, a Boston Globe article on the change in testing policy included warnings against vesting too much hope in the promise of genetic profiling of tumors.
The story by Boston Globe reporter Stephen Smith included this quote:
"I’m one of the most enthusiastic people for molecular personalized medicine that you will find," said Dr. George Demetri, director of the Ludwig Center for Cancer Research at Dana-Farber Cancer Institute. "But the cancer field has sometimes been plagued by people saying, ‘We’re going to cure cancer next month.’ "
It is unfortunate that ABC News failed to include such independent voices.
This story made it appear that genetic profiling of cancer tumors is always better than standard methods for evaluating a disease and selecting treatments. For most cancer patients there is not yet clinical trial evidence that the genetic profiling approach is superior.
This story overstated the importance of Massachusetts General’s planned expansion of genetic profiling of tumors.
These tests are done at many cancer centers; with the difference that at most cancer centers genetic profiling is focused on those cancers where there is evidence that the testing may provide important information about the best treatment options… rather than indiscriminately testing all tumors.
The story also fails to point out that there is no such thing as “a genetic profile test for tumors.” Doctors at Massachusetts General plan to screen tumor cells for more than 100 known abnormalities, but that represents just a small portion of genetic variations. There is no consensus on how much testing is appropriate.
This sort of genetic profiling has been used for certain types of cancer for several years. The only news is that Massachusetts General has decided to routinely offer profiling to all cancer patients, whether or not there is clear evidence that the testing is likely to improve their odds of receiving successful treatment.
We can’t be sure of the extent to which the story selection or content may have been influenced by a news release. We do know that it profiled only one medical center and only doctors from that place.