genomeboy.com

In this week’s issue of Nature, Bob Cook-Deegan, Shubha Chandrasekharan and I have a commentary on gene patents in diagnostic testing in the US. There is also a second commentary by Sibylle Gaisser, Michael Hopkins and colleagues that addresses the state of gene patenting in European diagnostics.  Nature has weighed in with its own meta-editorial and the indefatigable Brendan Maher has taken up the issue on the Nature Network blog. I encourage you to read all of them if you’re interested in gene patenting for genetic diseases—they’re not too long, even for my feeble attention span.

What we did—and by “we” I mean mostly Bob and Shubha with endless help from the Secretary’s Advisory Committe on Genetics, Health and Society and its Task Force on Gene Patenting and Licensing Practices ably led by Jim Evans—was to try to reconstruct the patent histories of a number of human genetic diseases and assess patient, provider and physician views. SACGHS asked us  to help answer the question: How have gene patents affected patient access to genetic testing?

The short answer: insofar as we can tell, not all that much. Patents may have helped bring genetic tests to market more quickly and to build markets for them in some cases, but it’s not at all clear that they were absolutely necessary. And occasionally, they’ve had obnoxious consequences. On the other hand, exclusive providers have a strong incentive to get third parties to pay for their tests. If Myriad had to rely on out-of-pocket payment for its full-monty $3000 BRACAnalysis test, how much smaller would its market be? My guess: A helluva lot. Even Myriad’s critics—and I’ve been one—would have to concede that its testing regime and payer coverage circa 2009 are outstanding (I was tested for BRCA mutations via DNA Direct earlier this year). Does that mean all gene patents are a good idea? Hardly. In a future post and/or a dingy bar we can argue about why that may or may not be the case.

One of my favorite movies is It’s A Wonderful Life, probably because it appeals to both my misanthropic and sentimental sensibilities.  The beauty of the film’s premise is that it’s A Christmas Carol to the nth degree: George Bailey gets to see what the world would be like without him in it, i.e., a dark and harrowing place.

We have no such luxury with gene patents. We can’t know what hereditary breast cancer testing in the US would be like without Myriad’s exclusive license; nor can we know what Bedford Falls would have been like had a single company obtained an exclusive license to cystic fibrosis genetic testing. We are limited to the natural experiments provided by human disease gene cloning in the 1980s and 1990s, patents on those genes filed by the universities where the research was done, and the subsequent licensing of those patents. The outcomes of those experiments are inevitably going to be complex and their consequences for public health neither unequivocally good nor categorically bad. Law and public policy are often instruments too blunt to negotiate such complexities. But I suspect within a decade this debate will be mostly moot anyway–the relevant patents will have expired and we’ll all have our genomes in our wallets next to our drivers’ licenses.

UPDATE: Kevin Noonan at Patent Docs has a different view.

…to the bloggers who came to my Science Writing class on Friday. Bora, Sheril (best of luck in your new home at Discover) and David–it’s an honor to have real, productive denizens of the blogosphere (unlike, ahem, some people) offer dispatches from the trenches. I hope this becomes at least an annual tradition. Plus you’re all so cute.

I’m having trouble getting my head around the idea that this happened 50 years ago.

From the unedited Wikipedia discussion page on Harvard psychologist, bestselling author and most importantly, member of the PGP10, Steven Pinker:

• The man was born and raised in Canada and spent a large sum of his life within the nation of Canada (Pinker himself points this within his books). Make mention of it in the article with due respect and be done with it.

“just like we don’t call Henry Kissinger a German statesman or Tolkien a South African author (at most, German-born American statesman or South African-born author), we shouldn’t call Pinker a Canadian… Mikkerpikker.”

• I am at a loss as to this elusive WE!! Wikipedia belongs to the world not one Ameri-centric view point. The foly of the above stated logic is that infact famous people do often get recognised with multiple nationalities, it just depends on what text you refrence (and where the text was published). Alexander Graham Bell is credited as a Scotish, Canadian, and American, inventor of the telephone, regardless of where he was working at the time he created his invention. Sir James Naismith, the inventor of basketball, is credited as both a Canadian, and an American inventor. Following this line of logic, Pinker has invented many theories and can be credited in this method.

• Further, Pinker spent his university days studying experimental psychology at McGill University in Canada this information can be found within any of his recent publications, such as: How the Mind Works, About the author, penguin books, 1999.

• I would appeal to peoples commonsense that it is clearly accepted that a man born, raised, and schooled within a nation is clearly of that nationality in our commonsense use of the word, despite whatever documents he may posses of citizenship at the time. (How else would people be capable of conceptualizing such terms as 2nd or 3rd generation Italian-Canadian.)

• The encyclopedia britannica has decided to call Steven Pinker Canadian-born American.

“At the forefront of cognitive science in 1999 was Canadian-born American experimental psychologist Steven Pinker, who in October published an eagerly anticipated book, Words and Rules: The Ingredients of Language. In a highly praised earlier book, How the Mind Works (1997), Pinker discussed the development of the human brain in terms of natural selection, applying a Darwinian…”[3].

• At the very least it seems fitting to follow in suit with this title. It does not follow that this is to deny Steven Pinkers Canadian-ness, but to recognise it. And as is fitting, he can be cited as both a Canadian and American Professor (as in the above examples of famous people).

• In closing (jestfuly) I must point out that Steven Pinker enjoys the game of Hockey, unofficially that makes anyone 90% Canadian, by default.–Scottmcmaster 10:17, 17 February 2007 (UTC)

Clearly the genotype-phenotype problem continues to dog us. (Who is this elusive “US?!” — ed.)

I’m a bit late on this (anyone who has visited this site knows punctuality is not my forte), but the Personal Genome Project is among the early adopters of the new Creative Commons vehicle for surrendering copyright:

CC0 (read “CC Zero”) is a universal waiver that may be used by anyone wishing to permanently surrender the copyright and database rights they may have in a work, thereby placing it as nearly as possible into the public domain. CC0 is not a license, but a legal tool that improves on the “dedication” function of our existing, U.S.-centric public domain dedication and certification. CC0 is universal in form and may be used throughout the world for any kind of content without adaptation to account for laws in different jurisdictions.

***

Another early adopter of CC0 is the Personal Genome Project, a pioneer in the emerging field of personal genomics technology. The Personal Genome Project is announcing today the release of a large data set containing genomic sequences for ten individuals using CC0, with future planned releases also under CC0. “PersonalGenomes.org is committed to making our research data freely available to the public because we think that is the best way to promote discovery and advance science, and CC0 helps us to state that commitment in a clear and legally accurate way,” said Jason Bobe, Director of Community.

via Slate

How will the poem be encoded?

The poem can be most easily encoded by assigning a short, unique sequence of nucleotides to each letter of the alphabet, as Wong has done. But I want my poem to cause the organism to make a protein in response — a protein that also encodes a poem. I am striving to engineer a life form that becomes a durable archive for storing a poem, and a machine for writing a poem — a poem that can survive forever.

Despite my snarky title,  I love that the poet Christian Bök is doing this (subscription only). Anything that defies people’s deterministic ideas about DNA and serves as a bridge between the two cultures is something we should be open to. That said, once this microorganism mutates for a few zillion generations, Bök’s poem could become gobbledygook…or worse.

Three-fourths of the nation’s doctors practice in small offices, with 10 doctors or fewer. For most of them, an investment in digital health records looks like a cost for which they are not reimbursed.It is scarcely surprising, then, that only about 17 percent of the nation’s physicians are using computerized patient records, according to a government-sponsored survey published last year in The New England Journal of Medicine.

“This is really not a technology problem,” observed Erik Brynjolfsson, an economist at the Sloan School of Management at the Massachusetts Institute of Technology. “It’s a matter of incentives and market failure.”

That market failure is a principal target of the Obama administration’s plan. A main feature of the legislation calls for incentive payments of more than $40,000 spread over a few years for a physician who buys and uses electronic health records.

Better late than never.