Study: Websites Marketing Personalized Cancer Care Don’t Always Tell the Whole Story

A study conducted by researchers in Boston has found that many Internet websites market personalized cancer care offerings to patients and doctors that do not have proven benefit. What’s more, many websites leave out important information about the products and services they market, including cost and possible limitations.

The study defines personalized cancer care as “products and services that could be used to tailor, personalize, or individualize care based on genomic or tumor-derived data.” This can include somatic testing – testing DNA from samples of a patient’s tumor and basing cancer treatment advice on that information. It can also include germline testing – testing people’s normal DNA to look for changes in cells (mutations) that may raise cancer risk.

The study was published in the March 5, 2015 issue of Journal of the National Cancer Institute.

The researchers used 54 search terms such as “personal cancer medicine,” “individualized cancer therapy,” and “tumor genetics” to find websites sponsored by commercial businesses, academic institutions, private institutions, and individual physicians marketing personalized cancer care. They found 55 sites that met their definition for personalized cancer care.

Non-standard tests

A total of 88% of the 55 websites marketed tests the researchers found to be non-standard, tests for which there is only limited or no evidence that they help patients. The websites don’t always make clear which tests are standard and which are not.

For example, 6 websites offered chemotherapy sensitivity testing, even though an evaluation from the American Society of Clinical Oncology (ASCO) found there is not enough evidence to recommend such tests.

Other types of services the websites offered included some type of tumor testing or analysis, testing a patient’s inherited DNA to evaluate for cancer risk, and interpretive services about what to do next in terms of treatment, such as helping find a clinical trial.

“I think a potential danger would result from basing treatment or prevention decisions on a technology that either might not be known to be helpful or one that might actually be inaccurate,” said co-senior author Stacy W. Gray, MD, AM. “People just need to know that that possibility exists and really think about doing this in a way that’s thoughtful and educated and by getting input from their providers.”

Missing information

The study found that only 29% of commercial websites included guidance to patients about discussing personalized cancer care products with their medical provider and only 10% included a directory of doctors who could provide the test or service. About half of the commercial websites included the cost of testing. Test prices ranged from $99 to $13,000.

The study also found that overall, personalized cancer care websites emphasized the benefits of the testing they marketed while including less information on the limitations. Only 27% of websites included any limitation information at all, while 85% included benefit information.

Examples of benefit information included the statements:

  • “Products and services being developed at (our company) are poised to transform cancer patient management, increase treatment efficacy, and reduce healthcare costs.”
  • “Based upon the test results, your options may include a new treatment being studied in a clinical trial.”
  • “Personalized approaches not only aid prevention, but can also improve outcomes for patients who are diagnosed with cancer.”

Examples of limitation information included the statements:

  • “Next generation sequencing approaches may provide incorrect sequence or mutational data due to insufficient coverage in specific regions of the genome, inability to distinguish highly related human sequences, and sequencing errors.”
  • “The assays do not require, and therefore do not have, FDA clearance or approval.”
  • “The test results themselves do not constitute a clinical diagnosis and should not be construed as medical advice.”

According to Gray, “There are limitations to genomic medicine, and we found that of the sites that were promoting personalized cancer medicine, a minority of them talked about the potential limitations. For example, an important limitation is that sometimes there are false positive tests and false negative tests. And those matter because if you’re basing treatment decisions based on test results it’s important to know if there’s a chance that that test result might not be accurate.”

Lack of regulation

According to the study, for-profit companies, hospitals, and academic centers are increasingly marketing personalized cancer care on the Internet, but there is very little regulation of genetic testing. From 2007 to 2013, more than 500,000 people purchased direct-to-consumer genetic tests, and one prominent company reported selling more than 22,000 somatic tests in 2014, adding up to revenues of $9.7 million.

According to Gray, some interest may be in response to the announcement by Angelina Jolie that she had preventive surgery after learning she was a carrier of a BRCA gene mutation that could raise her risk for certain cancers.

“Some people have actually formally studied the response of Angelina Jolie’s public announcement that she was a carrier of a BRCA mutation and have shown that it does increase interest in cancer genetic services,” said Gray. “Historically, when prominent people come forward and talk about cancer or genetics it tends to lead to a short term increase in interest in the subject matter. I think that it is a very interesting phenomena and what we saw with Angelina Jolie was very positive because it led to a greater awareness that some cancer is hereditary and that steps can be taken to reduce the risk of developing hereditary cancer.”

The debate over genomic marketing is also bound to intensify, according to the authors, in the wake of the US Food and Drug Administration’s (FDA’s) demand in 2013 that the genomics company 23andMe “immediately discontinue marketing” its personal genome service out of concerns for the “public health consequences of inaccurate results.” Since 2008, the Secretary’s Advisory Committee on Genetics, Health and Society has recommended that the FDA regulate all laboratory tests, including genomic tests, and the FDA has reported that it intends to do so.

“The take home point for patients and for providers is that many different types of tests are being marketed on the Internet. Some of them are helpful for certain patients and others may be beneficial in the future but at the current time, we don’t think that they are,” said Gray. “I would strongly encourage patients to talk to their doctor about the things that they see on the Internet and have a conversation about whether those things might help them and whether they are valuable enough to be worth investing their time, health, and money on those tests or services.”

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Marketing of Personalized Cancer Care on the Web: an Analysis of Internet Websites. Published in the March 5, 2015 issue of Journal of the National Cancer Institute. First author Stacy W. Gray, MD, AM, Dana-Farber Cancer Institute, Boston.

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