Saturday, July 24, 2010

Bad behavior for Navigenics and 23andMe according to government report - San Jose Mercury News

Navigenics, 23andMe slammed in government report - San Jose Mercury News

First let me say that I am not opposed to genetic testing, and to the use of the resulting data to target medicines for better outcomes and fewer side effects. I'm also not opposed to using genetic data as a reason to modify one's behavior if, for example, genes were found to indicate a particular risk of heart disease. A better diet and a little more exercise wouldn't be such a bad thing. However, one bad outcome of personal genetic testing is that the consumer who pays for, and receives, genetic data, is mislead into thinking their genes are predictive for a disease when there is little or no data to support it.  This is especially troublesome when the disease in question cannot be prevented by known means, and is currently incurable; Alzheimer's disease for example.  If the company goes further to offer them additional products that can help them stave off the said disease, then in my view, this is unethical and possibly dangerous. I have heard of this anecdotally from an employer of a local health food shop. This lady paid for her profile and then was sold an additional package of supplements and dietary aids intended to reduce her risk for a variety of diseases that her genes were supposedly pointing her towards.  To me, this is free-market opportunism at its most insidious.

In the news story above, a couple of personal gene testing companies are in trouble with the government because of their interpretations of the gene patterns to the customer.  Few genes can be definitively associated with disease risk and with the current state of knowledge regarding prevention of disease, there is little to be done with the genetic information.  The most useful application is to let patients know whether they will respond to a particular medicine, or be at risk of a certain side effect.  Genetic ancestry is also a popular use of genetic tests at present but this also carries ethical implications if misinterpreted.

By misleading the public into thinking the data mean more than they, do, Navigenics and 23andMe are doing a disservice not only to the consumer, but to their industry.  The government is already considering regulations for direct-to-consumer gene tests and hopefully these will be sensible and not too restrictive.  Research needs to continue on the meaning of genetic information and when the data is clear on a particular finding, patients and physicians should have access to tests. But companies must act responsibly with the data and the information they pass back to the consumer.  Genetic information must be accompanied with the caveat that the implications of the data are not well understood and that association of a gene with a disease does not imply causation. Systems biology scientists are working on algorithms that can take into account environmental factors and the influences of genes on genes, but we have a very long way to go before we can say a gene or genetic pattern actually increases risk in a definitive way. 
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