Project Jim completed

James Watson--of the famous Watson and Crick duo--just had his genome completely mapped. The articles I've read so far don't say whether the map will be available to the public. From what I understood Watson was reluctant to have that happen.

In any case, single-person genome maps are being touted in the media. Should I ask for one as a birthday present? Probably not anyone I know well enough has $1 to 2 million to spare. I expect the hype about $1000 genomes will return to the media.

The approach to the mapping is an interesting one in the Economist: the author talks a bit about genetic testing as a business model:

Technological advances are important, but so are innovative business models. A good example is the approach taken by Genomic Health, which sells a test that identifies a gene strongly correlated with breast cancer. Randy Scott, the firm's chairman, observes that unlike the hugely profitable markets for drugs or medical devices, diagnostic testing has traditionally been a sleepy, low-margin industry. So Genomic Health took a risk and marketed its test as if it were a medical device, justifying the high price ($3,500 per test) on the basis that more effective diagnosis and treatment costs less overall. It seems to be working: revenues this year will be around $60m.

Decode faced a similar difficulty in bringing its new genetic test for type II diabetes to market. Insurers will not usually reimburse patients for brand-new tests. So Dr Stefansson decided to launch the test last month using a novel two-pronged approach. His firm is distributing the test, which sells for about $500, in the usual way via doctors. But it has also chosen to sell directly to consumers through DNA Direct, an internet start-up. Ryan Phelan of DNA Direct says that direct sales help to reassure those who fear that the test results may be used to discriminate against them.

I should note here that normally I do not name businesses. I've made an exception since the article I am quoting is mostly about businesses and is not specifically negative or positive about the companies named.

The end of the article feeds directly into a topic we've been discussing in this blog for some time--regulation of genetic testing.

And that raises a far larger threat to the nascent industry. Technological hurdles and slow reimbursement can be overcome. The bigger worry, argues Michael Goldberg of Mohr Davidow Ventures, a Californian venture-capital firm, is over-regulation. Genetic tests are not regulated as tightly as drugs, but that may change. Laws compelling patients to share results with insurers could have a chilling effect. Conversely, proposed laws outlawing genetic discrimination could undermine the whole basis of medical insurance by enabling people at risk to buy cheap cover. Many fights loom on the road to the promised new era of personalised medicine.

What do you think? Do you think genetic testing should be regulated? If no, why not? If yes, how?

Looking forward to your input,

Marie Godfrey, PhD

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