tag:blogger.com,1999:blog-1812431336777691886.post9102249522321237985..comments2024-02-29T03:57:00.088-05:00Comments on The Mermaid's Tale: Farming the Madding Crowd -- 23andMe announces its first patentAnne Buchananhttp://www.blogger.com/profile/09212151396672651221noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-1812431336777691886.post-57938966668202832172012-05-31T20:05:36.658-04:002012-05-31T20:05:36.658-04:00Yep, they crowd sourced the data collection, now c...Yep, they crowd sourced the data collection, now crowd source the solution. <br /><br /><a href="http://www.nybooks.com/articles/archives/2004/jul/15/the-truth-about-the-drug-companies/?pagination=false" rel="nofollow">Here's </a>Marcia Angell in The New York Review oF Books, 2004, on how much sympathy we should have for drug companies re. the cost of R&D (and she has said elsewhere that the actual cost is more like a tenth of what they claim):<br /><br />"[R]esearch and development (R&D) is a relatively small part of the budgets of the big drug companies—dwarfed by their vast expenditures on marketing and administration, and smaller even than profits. In fact, year after year, for over two decades, this industry has been far and away the most profitable in the United States. The prices drug companies charge have little relationship to the costs of making the drugs and could be cut dramatically without coming anywhere close to threatening R&D."Anne Buchananhttps://www.blogger.com/profile/09212151396672651221noreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-71145519096878027522012-05-31T19:59:32.775-04:002012-05-31T19:59:32.775-04:00That can be convenient accounting and lore put out...That can be convenient accounting and lore put out by Pharma to justify their claims about patents. I was at a meeting when this kind of thing was said (by a VP at a major Pharma), and several gene-therapy startup company scientists sitting next to me just burst out laughing, saying they'd be right out of business if the cost were anything close to that.<br /><br />Why are there several different drugs for various major diseases, if exclusive access to 'the' vital secret were needed? Indeed, spin-off drugs based on the same finding developed by one company, are made by others.<br /><br />And, if King Google were that concerned, he could give his big donations just to one company, to compensate them for their 'risk' (Pharma is one of the most profitable industries, it is often reported). Or he could use crowd funding, -openly- seeking donations and participation with PD explicitly in mind. And he could ask for the funds to be given to his favorite Pharma.<br /><br />And, I've heard that Pharma is all for free enterprise. Beyond that, could we dare even to challenge the convenient claim that people will only do good things if they are made rich in the process?Ken Weisshttps://www.blogger.com/profile/02049713123559138421noreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-13705696257926138312012-05-31T19:44:04.894-04:002012-05-31T19:44:04.894-04:00From the spittoon: "Bringing a new treatment ...From the spittoon: "Bringing a new treatment to market generally takes more than ten years and costs more than $1 billion (http://www.nature.com/nrd/journal/v9/n3/full/nrd3078.html). Due to the time and expense required to develop a drug, pharmaceutical companies typically only invest in developing treatments that are based on patentable findings."Holly Dunsworthhttps://www.blogger.com/profile/05260104967932801186noreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-87816927977924907612012-05-31T19:40:56.568-04:002012-05-31T19:40:56.568-04:00I'd like to see them lay out their analysis fo...I'd like to see them lay out their analysis for us, showing how they eliminated all other possible means for achieving the same PD treatment/curing potential without gene patenting. I'd like to see how it would be impossible to cure PD, with this knowledge out there, if there wasn't a gene patent. How it would be impossible to treat/cure Mr. Google and MJFox without a gene patent. Show us, scientists at 23andMe! Wouldn't it be nice if they could lead us through all their struggling through this dilemma? That's assuming, however, it was ever a dilemma.Holly Dunsworthhttps://www.blogger.com/profile/05260104967932801186noreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-8514382317659571802012-05-31T18:34:16.026-04:002012-05-31T18:34:16.026-04:00No head-slapping needed. They're smart enough ...No head-slapping needed. They're smart enough to cover their bets, but that doesn't mean that the consent was really informed, and we all know that informed consent, in general, is often clearly an exaggeration. Often, if not mainly, people are not really informed, and the consent is often carefully crafted with the proverbial small print (to protect the consentor, not the consentee).<br /><br />Even if 23'n is technically within the law, as I'd expect they are, they knew very well what they were up to.<br /><br />NIH has long experience wangling consent for investigators to get what they want from patients or biomedical research subjects (or lab animals, poor things). This doesn't mean studies are typically evil,or commonly abuse the signers--and often it is wholly legitimate. <br /><br />But anyone associated with IRBs, as with the legal system, knows very well who's interests are mainly being protected. Just as advertisers know very well how to be legal sociopaths: deception is often the art in question. <br /><br />Even if everything were on the technical up and up, it seems to me personally to be a gross abuse of public trust to patent in this way. 23'n should have shouted it from the Googletops as is said in an earlier comment.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-34280412251702218722012-05-31T18:12:40.800-04:002012-05-31T18:12:40.800-04:00They've answered many of the comments at the S...They've answered many of the comments at the Spittoon, including mine. They do discuss "intellectual property rights" in the ToS and Consent materials but I never linked that with gene patenting. Forehead slap. I'm clearly not a lawyer or anything close. Shows you how easy it is to mislead people with consent even if they're supposed to be informed pretty well already (like me).Holly Dunsworthhttps://www.blogger.com/profile/05260104967932801186noreply@blogger.comtag:blogger.com,1999:blog-1812431336777691886.post-56931037787896359352012-05-31T14:27:29.915-04:002012-05-31T14:27:29.915-04:00I just wanted to add that if Mr Google wants to fo...I just wanted to add that if Mr Google wants to foster a cure or preventive for PD, based on genetic risk studies, and if 23'n has a data base that could be useful, then they should make it as openly, loudly, blatantly public as possible. Let all comers do their damnedest to develop a miracle drug! (isn't that what capitalism is supposed to be about, according to its apologists--open competition?) <br /><br />There is no legitimate reason to limit this to one company (and profits, for whomever). The idea that companies won't touch it without patent protection is like many elitist rationales (like trickle-down economics), designed to legitimize giving more to fewer.<br /><br />There are various pharmas working on similar disease problems, using public data from the literature and so on, without having to have patent protection (which, of course, they'd naturally like to have).<br /><br />So there's nothing laudatory or even philanthropic about farming unaware consumers for something to hand off to an insider company, in my view.Ken Weisshttps://www.blogger.com/profile/02049713123559138421noreply@blogger.com