Will we – you and me and our parents and neighbors – be a significant force in quelling the tide of over-testing for the early detection of disease?
When you have had cancer as many times as I have, you become suspicious that there are more cancer cells inside you waiting for some obscure signal to make them leap into action and start multiplying out of control. So you develop a deep attachment to the constant testing, despite the high price of time, resources and anxiety, because very occasionally that suspicion is validated by the life-saving (so far for me) early detection of yet another cancer.
I used to think that this sense that I am a mere vessel for latent disease was unique to those of us with serial bad diagnoses. But similar anxious suspicions have seeped into the conversation and consciousness of many healthy people. Anxieties about disease are being nurtured by popular beliefs that our future health is encoded in our DNA. And they are heightened and in turn calmed by the decades-long public promotion of the value of screening and early detection tests.
While the science of genomics has far outpaced the public’s understanding of the promise, pitfalls and progress of gene-based medicine, the American public has embraced its core idea: genes are destiny. “She has blue eyes just like her dad.” “Alcoholism runs in his family.” Every time we are asked for our medical history or complete a genogram, we dredge up the cancers, diabetes, epilepsy and heart disease of our great grandparents and aunts twice removed and get the message: “Watch out. What was theirs may be ours.” Media reports on the discovery of genes associated with feared diseases, television shows illustrating our ancestors’ genetic hold on our skin color, temperament and health, and advertising of new low costs for unlocking future health secrets by getting one’s own genome read all contribute to a belief that our bodies contain the seeds of our future diseases.
Many of us welcome the chance to get a mammogram or PSA test or have our doctor check our blood for early signs of diabetes or heart problems. We believe these tests work. They prevent illness and death. Our employers encourage testing with messages in our pay envelopes and incentives in our benefits plans. The government and health plans push us to get tests through media campaigns and by making tests free. And it’s impossible to quantify the dollar amount that organizations like the American Cancer Society and the American Heart Association have invested over the past three decades in educating, cajoling and scaring us into participating in screening for cancer and heart disease. The messages are not nuanced. They are bold, decisive and certain: Your life is in danger if you don’t get screened.
In an op-ed article in The New York Times, Gilbert Welch once again described how testing-as-prevention results in over-diagnosis, overtreatment and injury sometimes and for some people. He recounts how, as new evidence undermines the claims of the life-saving contributions of screening tests for prostate and ovarian cancer, for example, the enthusiasm of guidelines producers and some physicians for some screening tests is waning.
Dr. Welch is not alone in alerting the public to change its attitude toward the early detection of disease. Otis Brawley, Shannon Brownlee, Rosemary Gibson, Gary Schwitzer and others write frequently and vividly about the dangers that the public faces from screening.
So back to the original question: How likely is it that this message will get through to us in sufficient numbers that our actions will affect the demand for screening tests?
Slim, I fear.
Our confidence in the benefits of early detection of disease will not be easily over-ridden. We hold dear the possibility that whether we are healthy or sick, we can transcend our fate – and our DNA – through a rigorously observed protocol of screening and early detection. Deviating from that protocol is a challenge to our own hopes and to decades of messages from authoritative sources. Further, many of our clinicians share our reluctance to back away from accepted norms about screening. A recent study found that more than half of the primary care physicians polled couldn’t untangle personalized risk statistics. They will not be able to recommend taking a more nuanced approach to screening.
Reducing the overuse of screening tests is the responsibility of the scientific, professional and financial stakeholders in health care. Payers can and should refuse to pay for inappropriate tests. They can and should foot the bill for free second opinions. Health plans can and must monitor and provide feedback to individual clinicians. Professional societies can and must ensure that each of their members knows where to find and how to use evidence about how to personalize screening guidelines for individual patients.
Sure, efforts to inform us about the dangers of various screening guidelines will be eagerly adopted by some small percentage of the educated and involved public. But for most of us, the promise we’ve been sold that we can decipher our genetic fate and then act to alter it by getting screening tests is simply too great to resist.
Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.