One of the most interesting and challenging issues in the health insurance world these days is the determination of which members covered by a plan should receive genomic testing for a predisposition to cancer. Not only are such tests frequently expensive but they can also lead to downstream costs, particularly if a decision is made to pursue prophylactic surgery. In such cases, "normal" organs are being removed. The most obvious example of this scenario is BRCA1 and BRCA2 testing. A recent article discussed a study funded by Aetna about this topic (see: Who Gets Genetic Testing for Cancer?). Below is an excerpt from it:
Aetna is examining data from 13,000 of its members to figure out if patients who should be getting breast-and-ovarian cancer screening tests are in fact being offered them. Such tests, which cost up to $3,000 a pop, screen for genetic defects that put some women at high risk of these cancers. A positive result means that extra precautions should be taken to make sure a cancer is caught at its earliest stages. But Aetna says there are questions about whether women most at risk are getting the tests, and whether there are socioeconomic and racial disparities in their use. There’s some evidence, like this study by the Robert Wood Johnson Foundation, that suggests that differences in use exist. The company’s two-year study, described here, could help it identify members most likely to be helped by the costly test and reduce spending on testing for women who might not need it. “There is valid concern that some women are receiving this test unnecessarily, while others, particularly among racial and ethnic minorities, as well as poorer women, should be receiving these critical tests and are not,” said Anne Beal, president of the Aetna Foundation, an independent charitable arm of the insurer. “This study may validate the need for specific strategies to eliminate barriers to these tests –- whether they are knowledge-based, culturally-based, or access-based –- and help improve the health outcomes among high-risk poor or minority women.”
Although the over-utilization of lab tests has received the most attention over the past decades, more attention is now being paid to the under-utilization of lab tests. I very much like the phrase used in the article above: the need for specific strategies to eliminate knowledge-based, culturally-based, and access-based barriers to lab testing. In my opinion, we know the least about the cultural factors that lead to both over and under-utilization of lab tests. Here's an interesting quote from a recent article about "omics" testing (see: Challenges of the ‘‘Omics’’ Future and Pathology Informatics Systems):
...[T]echnology often brings about unexpected consequences; the same applies to genomic technology and proteomics analysis. The examination of genetic sequences carries significant bioethical, social, and cultural implications. From a bioethical standpoint, patients will lose individual power to decide whether they want to know their genomic structures. The analysis of human genome through laboratory testing has the potential to create data warehousing and data mining in the discovery of new knowledge. From a utilitarian point of view, this action is justifiable. It is, however, important to realize that the individual right of consumers is breached in the process of knowledge discovery. From the socio-cultural standpoint, the availability of genomic analysis might reveal some important yet unacceptable ‘‘facts.’’
I want to return at some later time to the question of medical knowledge discovery versus the individual rights of healthcare consumers. Right now, most of the weight is on the former because of the general admiration in society for scientific discovery.
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