Genomics & Personalized Medicine

Just how useful are the products offered by “personalized genomics” companies? Are they clinically useful? Harmless entertainment? A little of both?

(You may have noticed I’ve been blogging a lot about genomics, genetics, biotechnology, etc., lately. Many of you know that industry is a special interest of mine. But I think even those without a special interest may find these postings useful, simply because in many cases the biotechnology industry faces all the same ethical issues as other industries do, and in fact many of those standard issues take on special significance for these companies doing commerce in cutting-edge science.)

Thursday evening I attended this very good event: Personalized medicine: Are we ready?, put on here in Toronto by the Canadian Institute for Advanced Research (CIFAR).

Representatives from the personalized genomics companies 23andMe and Navigenics were on the panel, as were several top geneticists and a health lawyer (namely my pal Tim Caulfield). 23andMe and Navigenics are “personalized genomics” companies. Both offer customers broad genetic tests covering a wide range of health-related genes. Prices range from several hundred dollars to several thousand.

Oversimplifying greatly, what I took home from the panel discussion was this: the companies believe that their products can provide useful information, and can at the very least get consumers to focus on their own health; the other members of the panel thought that the usefulness of such tests for the general public is severely limited. The key worry was about clinical validity and clinical utility of these tests. Basically, can the information they provide actually help customers make better health decisions? And will buying these tests lead customers to better health outcomes? So far, there’s reason for skepticism.

In the Q&A after the panel discussion, I asked the panel whether their doubts about the validity & utility of these tests would be best handled by government regulation, ethical restraint on the part of genomics companies, professional standards among geneticists, or education for potential customers. No one seemed to have a satisfying answer. But identifying the right levers may be as important here as deciding just how good or bad the product is.

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