Genetic Testing: Ethical to Market a Not-Very-Useful Product?

Arthur Caplan (a very prominent U.S. bioethicist) has a good column on breast cancer genetic test over at MSNBC: Breast cancer gene tests — not worth the price?

Fear of breast cancer has created a tempting market for companies to sell genetic testing directly to consumers. The disease kills 40,000 people a year in the U.S., with an estimated 212,920 new cases diagnosed in 2007, according to the Mayo Clinic.

It’s no wonder women would want a reliable gauge of their risk. However, American women should be aware that genetic tests for breast cancer are more hype than real hope.

At least two companies, now — Myriad and deCODE Genetics — are offering genetic tests that they claim can, at very least, help women assess their risk for breast cancer. But according to Caplan (and many other commentators) the value of these tests (which cost thousands of dollars) is very much in doubt.

According to Caplan,

Of the more than 200,000 new breast cancer cases, only about 20,000 seem to be connected to the BRCA1 and BRCA2 genes — the genes most closely linked to the inherited form of the disease that Myriad’s test can detect. For women without a family history of the disease, perhaps 1 percent would benefit from the test.

Note that if a product that costs, say, $2,000 is useful only 1% of the time, that means from a social point of view each useful test effectively costs $200,000. Or, it means spending $2,000 on something that has a 1% chance of telling you something useful (though note that the info won’t prevent or cure cancer). So, from a consumer point of view or a social point of view, the tests are pretty ridiculous. Caveat emptor, to say the least!

Caplan’s prescription is more regulation, and that very likely is a good idea. Genetic technologies just aren’t the kinds of products you can expect consumers to understand well, and such serious information asymmetries constitute a classic case for regulation. In such cases, regulation is actually required to promote the goals of a free market (i.e., mutually advantageous, wefare-enhancing exchanges).

What about the ethics of selling a not-very-useful test, or a not-very-useful product more generally? (Note that I’m talking about ethics, not law. It’s mostly legal to sell not-very-useful products. There’s no law against selling Tarot cards or holy water or books on the healing power of crystals. Of course, those things don’t typically cost thousands of dollars.) But the analogy is of course an unfair one. Genetic testing is rooted in science, and even if it’s not as useful as the marketing would have us believe, it’s a far cry from the wares hawked by self-proclaimed psychics, mediums, and faith-healers. Yet in both cases, someone is selling something that is highly unlikely to prove useful, and it is highly unlikely that buyers will know that in advance. There are certainly other products, the objective value of which is pretty unclear but the sale of which is not considered unethical. Will buying a Corvette win you the respect of your snooty neighbours? Probably not. Will wearing Axe deodorant really make you a hit with the ladies? Not likely. But then, reasonable people (even without a PhD in psychology or biochemistry) know that, or would if they stopped to think for just a second or two. The value of such products — their ability to deliver what consumers want from them — is suspect, to say the least.

One thing that helps make genetic testing a reasonable product is the fact that potential consumers can’t (for now?) order the test directly. According to deCODE’s press release, for example: “deCODE BreastCancer™ is a DNA-based reference laboratory test performed using a simple blood sample or cheek swab, ordered by physicians on behalf of their patients.” [emphasis added] This means that women interested in the breast cancer gene test have to go through their physician, who (maybe!) understands the limits of the test well enough to advise her on it. Other companies are offering other genetic tests “direct-to-consumer,” and those are more problematic. But even a test that has to go through a physician is open to question. For starters, many physicians are not well trained in genetics, and others will simply be swept along by a patient’s zeal and agree to order the test, regardless of its appropriateness. The net result is that these companies are walking a very fine line, by advertising directly to consumers an expensive, hard-to-understand product that is useful to few but taps into a fear shared by many.

1 comment so far

  1. Greg Pawelski on

    The DNA theory of cancer (a limited number of genes causes cancer, so cancers are more or less the same) hasn’t yet produced the types of breakthroughs we all want. Most everyone in cancer research seems to have centered their attention on DNA being the culprit.It would be expected that after spending so many years of pursuing this one angle, and the numerous links that have been made, this should have lead to more progress than is presently observed. There is always a cytogenetic and a biochemical individuality in every cancer.Growing evidence suggests that gene-based prediction is not stable and little is known about the prediction power of a gene expression profile as compared to well-known clinical and pathologic predictors. Cancer prognosis from a handful of genetic mutations that drive a cell into uncontrolled growth, has failed many aspects of cancer.Genomics are far too limited in scope to encompass the vagaries and complexities of human cancer biology.

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