No, doctor.

With the explosion of the internet and search engines, the modern-day patient has gained unprecedented access to the previously esoteric realm of medical information. But, with all of this information available free and easy on websites like WebMD, do patients really gain any understanding of what may be ailing them, any real benefit? Do they become better-informed, or, as the old adage goes, is a little bit of knowledge actually a dangerous thing?

Of course, the answer to this last question all depends on how a patient acts on the information he digs up on the web. Unfortunately, however, the empowerment that patients feel as a result of this flood of knowledge can often lead to blatant disregard for a doctor’s trained opinion. A recent New York Times article captures this sentiment by relating the story of a woman who, “when it comes to a diagnosis, […] regards doctors mainly as a source for a second opinion. The first opinion is her own, she said.” Perhaps one of the most notorious examples of the drawbacks of this democratized form of medical care where patients feel as if they are on equal footing as their physicians is the story of the CA-125 email. Described here, a chain email with its origins in the case of a woman belatedly (in her opinion) diagnosed with ovarian cancer, the letter urges women to demand their doctors to administer a CA-125 blood test for ovarian cancer. Despite the claims of the email otherwise, this blood test is not recommended as an ovarian cancer screening test because it not only misses 20% of true cases of cancer, but it also gives a large number of false positives that have led to women undergoing unnecessary worrying, tests, and even surgery. (To view a doctor’s response to the chain email, click here.)

The huge surge in the number of genetic tests being marketed directly to patients, as I wrote about last time, presents the same problem if not an even more exaggerated risk to the wellbeing of patients. A NYT article on an as-of-yet unreleased NIH Secretary’s Advisory Committee on Genetics, Health, and Society report on this issue succinctly summarizes the situation:

The results [of genetic tests] can lead to momentous decisions. For example, women with a family history of breast cancer rely on them in deciding whether to have surgery to remove breasts or ovaries as a preventive measure.

With use of the tests growing at an explosive rate, the panel concluded that patients could be harmed. In most cases, the tests do not pose a direct physical risk; but, the panel said, if a test is inaccurate, patients may be given risky, unnecessary treatments or denied treatments that would be highly beneficial.

Just as some women suffered because of the inaccuracies of the CA-125 blood test, more people may be at risk by insisting upon genetic tests that are untested, unregulated, and unknown to their physicians. The NYT article quotes the panel’s report as saying “there is currently no requirement that test providers disclose information to support claims about the accuracy and validity of testing,” creating a free-for-all environment that does nothing to protect the patient.

I don’t want to seem like a Luddite, though, sticking to traditionalist medicine and eschewing these new technological and scientific breakthroughs in genetic testing. There are a number of tests approved by regulatory committees such as the FDA that have unquestionably and thankfully resulted in a higher level of patient care. Despite this, rushing to adopt unproven tests and valuing their results above physicians’ opinions is a dangerous path that has been taken before and, I fear, may be followed once again.

-Chris Adkins


*The NIH report should be released here sometime in February.

~ by slipstream99 on January 19, 2008.

One Response to “No, doctor.”

  1. It’s not being a Luddite to question unnecessary genetic tests.

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