Bioethicist Arthur Caplan Says Corporate Greed Drives Genetic Testing Marketplace

by Dr. Hsien-Hsien Lei
Posted October 15, 2008 in DNA Testing, DNA and Disease

Fresh on the heels of the launch of the deCODE BreastCancer genetic test last week, Dr. Arthur Caplan, renowned director of the University of Pennsylvania Center for Bioethics, said in an article for MSNBC.com that breast cancer gene tests are not worth the price.

If you are worried about your risk of getting the disease, or are thinking about getting a genetic test done for any other reason, talk with your doctor or a genetic counselor who can determine whether your family history justifies the expense. You may be surprised to find that you can make changes in lifestyle and monitoring your own health that can reduce your risk without testing.

Dr. Caplan even goes so far as to accuse genetic testing companies of corporate greed which, given the current economic environment in the U.S., is bound to send shivers down their spine.

With respect to deCODE’s breast cancer genetic test, it examines seven single nucleotide polymorphisms* (SNPs) that are purportedly involved in 60 percent of all breast cancers. Results from the test are given as personal lifetime relatively risk compared to the general population (specifically people of European descent). Other risk factors such as family history, pregnancy history, etc. are not taken into consideration when calculating a deCODE BreastCancer genetic test taker’s risk.

deCODE’s Chief Scientific Officer, Dr. Jeff Gulcher, responded to Dr. Caplan on its blog, deCODE You (a member of the DNA Network) and drew analogies between the BreastCancer genetic test and LDL-cholesterol tests. Anyone who is identified to be at higher risk of breast cancer (or in the analogy, high cholesterol leading to cardiovascular disease) would benefit from greater vigilance, more intensive screening, and possibly, preventive therapy.

Another DNA Network member, Dr. Steve Murphy at Gene Sherpas calls the deCODE BreastCancer test “hype.” Cancer Research UK also believes that “it’s too early for a test of this kind to be released to the general public.” Dr. Len Lichtenfeld of the American Cancer Society does not believe the test will “advance our cause in the fight to reduce deaths from cancer in a meaningful, evidence-based and scientifically accurate way.”

Speaking of cost, though,it seems that 23andMe customers get the better deal because all of the six of the seven SNPs (rs4415084 was on the v1 chip but not on the v2 chip) examined in the deCODE BreastCancer genetic test are included on version 2 of the 23andMe gene chip (I checked using SNPedia) not to mention the other nearly 600,000 SNPs included in the 23andMe report. A 23andMe DNA test costs $399 while a deCODE BreastCancer genetic test costs $1,625.

deCODE’s test offers other bits and fancy algorithms for calculating risk to justify the price. But customers should be aware that there is more than one way to get the genetic data they desire. And that data’s worth can be hard to price.

*See the list of SNPs in this sample report (pdf).

via Al’s Morning Meeting at Poynter Online

NB: I am a consultant to DNA Direct, a genetic testing company.

Photo Credit: abbyladybug

*Thanks to Mike Cariaso of SNPedia for clarifying what’s on the 23andMe chips.

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5 Comments »

Comment by Mr. Gunn

2008-10-15 12:28:26

I just don’t think the argument holds water. If someone wants the data, who is Caplan to say they should or shouldn’t get it? The only way to get from here to the conclusions he’s making is to presume that people don’t understand that information comes with uncertainties, something that most genetic testing companies take extreme pains to point out.

I think maybe he’s in the “less information is better” camp, but worse, thinks that everyone should be.

Perhaps I’m a little grumpy having just moved to California, where it seems like whenever someone doesn’t like something, their approach is to get it banned for everyone, but consider this for a moment: Are there physicoethicists, or chemoethicists, or astronomoethicists? If not, is the presumption that biologists are somehow less ethical than physicists or chemists?

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Comment by cariaso

2008-10-15 23:43:06

Actually SNPedia shows that 6 of the 7 snps are on the 23andMe v2, however
http://www.snpedia.com/index.php/Rs4415084
is only present on the older 23andMe v1, and has been removed from the newer v2.

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Comment by Hsien-Hsien Lei, PhD

2008-10-16 11:05:32

Thanks for clarifying, Mike. I saw that but thought it was an omission on SNPedia! Post corrected.

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Comment by D

2008-10-16 00:57:16

I am shocked that Mr. Caplan believes that the genetics companies like DeCode are looking to make some kind of profit on their endeavors — it’s almost un-european…

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Comment by helen dezel

2008-10-18 18:38:34

Argh!! Genetic testing - another benefit that my family will never be able to afford as an average American these days. And of course, my family would be a study in anomolies and “zebras.” If it is a one in five million chance, we will get it. Scleroderma, celiac sprue, lymphoma, lupus, MS, CRAO, Hyper IgM, arthritis, interstitial cystitis, IBS, Eczema, basal cell carcinoma — we are running rampant with autoimmune, primary immune and functional illnesses in a family of 20. Severe exposure to a Superfund site and we starting going down like dominoes starting in the 70’s. The genetic mutation has been found in the third generation but others should be tested. My entire family should probably should stop breeding. However, we will never know because the much-needed genetic testing is far beyond our financial reach these days. We are barely holding our heads above water just getting treatment. Americans without universal health coverage, many members of my family are just months away from bankruptcy. But hey thanks to all the genetic testing companies for reminding us that medicine, like justice, is for the rich in the U.S.

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