An analogy:
An apple is something that can regenerate. You can plant the seeds in the ground, wait for the tree to grow zzzip... a little fast forward and see, it regenerates. Apples forever and ever.
But after a while you find out that you didn't really want apple pie, you hate the taste, you'd rather have a pear pie. No way to get a pear from your apple tree.
Or, you're not the best gardener in the world (like me) and your first attempts at growing the apple tree don't really work, so you need more apples as starting material.
Hm, is that understandable or did I mess up my analogy?;)
Ahhh ... love the Stephenson reference !!!
on
Pizza Without Wires
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· Score: 1
If only my pizza would be brought by a Deliverator, now... and within 30 minutes, please!
Re:Offtopic But Core Ethical Question The Same
on
The Immortal Cell
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· Score: 1
OK, thanks for you detailed reply! I would like to take the discussion further by commenting on some of it.... hope you don't mind
You are right...its not strictly about patents but the fact that people have been using "stuff" from *other people* for "fun and profit" even though it might not be intended that way.
I agree. I am very much against gene patents, in the least since there is no invention behind it. In my mind, a patent must have an invention behind it (OK, not necessarily true in US patent law, I know). After all, that's what is the essence of it, not a discovery, but an invention... not chance, but skills.
At the same time, I think, however, that in the same line of reasoning, you don't hold the rights to your own genetic material. You didn't invent it, if anybody, it should be your parents and their decision to have sex at a specific time, chosing a specific pair of egg and sperm, which before had undergone genetic recombination in a certain way. Since you can hardly influence that, your DNA IMHO is not your intellectual property. They (the researchers) shouldn't own the rights, in the same way, you can't hold the rights. They should be public is what I am trying to say.
And considering the Moore story, I have read about that, too. And I don't like at all what happened there. But it's like everywhere in life, there are morally bad researchers and better ones. So I think we have to look at these stories put into a larger perspective, and in that way, we are not faring all too bad.
This article shows some anicetoded stuff. Stuff from companies rediculously overcharging just to test for a gene that causes life threatening problems(just the test...not even close to a cure) to limitations on the number of tests per year in the hopes they can get a profitable business deal out of it.
Lets say you are a university researcher(you claim to be) and you want to do a study genes and breast cancer. Oops! You can't do that because according to Myriad Genetics, which holds a bunch of patents on genes responsible for breast cancer, they control that stuff.
Oops, too, that is not true. You are allowed to do as much research as you like. You are not allowed to commercialize your results without a license from Myriad, however. But using the patented genes for studies or truncation assays or or or is perfectly legal in academic research (to my state of knowledge) There are plenty of academic research projects on BRCA1 (the gene Myriad patented), just have a look on PubMed for BRCA1.
How many projects had to be scrapped because they by accident stumbled into a gene someone patented and couldn't get or afford permission to continue work?
Again, none if you do research for the sake of gaining knowledge. If you want to start a company on your findings, then, yes, time to change projects... But I think the ethical debate we're having is about research itself, no?
I hope I contributed something informative, and not just flamebait:)
People have come forward to hospitals saying "I should be dead but I've developed an honest resistence to [nasty disease]".
Doctors run said person's blood and other private bodily fluids off to some lab somewhere, make patents, write papers, and get famous while the
original people who were honestly trying to selflessly save the lives of others is completely left out(...).
Could you please back this up with some actual information, i.e. facts?
Any law that make it illegal to check your body, the most private property on the face of the planet, is inherrantly wrong! Why do we continue to let
these pharma companies do this?
They claim "..it costs money to do gene research blah blah blah.."
What law are you talking about?
And actually, while I see your point somewhat, don't forget that the development of a new drug takes 15-20 years, involves a lot of researchers (who expect a paycheck), expensive instruments, reagents, incredibly expensive clinical studies. The pharma company expends all of this in advance, and when a drug gets on the market, they'll have only a few years before the drug can be legally copied. And they want some return on investment. This is what makes drugs so expensive.
You might think that the big work is done when your person walks in to the doctor with her strange resistance, but it's not... It's just the beginning of a multi-year/multi-million dollar process.
disclaimer: I am a university biologist, not connected with industry in any way
Re:Your cells are free, HeLa Cells cost $$
on
The Immortal Cell
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· Score: 1
And even if it's just little money, the main issue is that something is being sold and someone other than the original owner is making money from
it.
Hmmm... I think there is something here that is hard to define. From the cells themselves, I can't believe much money has been made. They are available at self-cost from repositories, e.g. ATCC, or even for free if someone in your institute has a stock... As such, the (monetary) value of the cells is negligible.
Of course, there is the other issue, which is: How many novel findings have been made with these cells, could they have been obtained without them, and has any of these findings produced something with commercial value.
This is always an issue with basic research, in itself it generates nothing of commercial value, but the insights might lead to an idea for an anti-cancer drug or whatever. Now, where do you draw the line? Can you really still directly attribute a new drug to the very HeLa cells, with which somebody did some research maybe twenty years before, not related to that drug discovery (the time-to-market for novel drugs is somewhere between 15 and 25 years)
I think there is another point that gets lost when you read the original article: While HeLa cells were the first immortalized cell line, there are many others now on the market, so the cells are not quite as unique as the article makes you believe.
(...)but I still think it's sad that Henrietta Lacks' contribution was never recognized and someone else got the glory.
Well, in the biology crowd, the name Henrietta Lacks certainly is known, even though her story is often told as an anecdote. But more recognition in the public would be certainly nice. On a side note, since then, researchers have agreed not to name derived cell lines after the patients they were obtained from (as in HeLa). This was decided on in an effort to keep the cells name separate from any individuum, for whatever that's worth...
Re:I can drill for oil on your land for free then?
on
The Immortal Cell
·
· Score: 1
welllll.... Who is making money off these cells? I know the piece this story links to is a bit confusing, but I can assure you that there's no-one out there making money off the cells. As someone pointed out, they are available by the ATCC (American Type Culture Collection) for $167. This is not a lucrative business, I would assume it about covers their costs of storing the cells and administrative efforts.
Also, when you (as a researcher) buy a vial of these cells, you can make your own stocks. Indeed, probably, you wouldn't even have to order them, somebody in your institute probably has a stock she's willing to share.
Invaluable research tool - yes
Lucrative business - definitely not(so far at least)
The argument that it isn't my money we're talking about was brought up before and the way I originally meant it is explained by me and others in the replies. I don't want to add to that except that in my case (a Ph.D. student), talking about "job" and "paid" is relatively sarcastic. We definitely don't do it for the money, but to get it over with and move somewhere else (many even move out of mol.bio.) where you get "real money".
I grant that publishers do the work of publishing and should receive recompensation for it. I concur that nobody would do their work for free. What is odd is that the researcher pays to publish and pays to read afterwards. And that it's expected for a researcher to do part of the journal's job, for free (I am talking about peer review).
Disclaimer: I am not in charge of subscriptions at our institute, so I know nothing of special terms, or mass order reductions, I am just looking at the paper's web sites
Okay, so an individual subscription for Cell, one of the prestigious ones, would be $230 for me (international price). An institutional subscription is $800. And that's without online access, this costs extra.
Another perstigious journal would be Nature, there, it's $163 for a personal subscription(again, only the print issue)... couldn't find the institution rates right now.
While you might say, after all, that's not so expensive, remember that a well-stocked library must keep subscriptions to many publications (my estimate would be at least 50 to 100 to be current on molecular biology), since relevant articles are published in diverse journals.
I think the situation is even worse than what Michael Eisen said it to be in the article:
Currently, Eisen said, "We volunteer the material, the reviewing, the editing, and then we pay to get access to it"--a process he likened to a midwife who delivers a baby and then charges its parents to visit it. "
It is worse:
As a researcher, you do your research (your money and time), then you write it up in a suitable format for the journal you consider submitting it to (your time) and the guidelines to authors are sometimes quite intricate to get right. Next, you submit it to the journal, maybe even by FedEx or similar (your money). After the editor receives the manuscript, he is going to send it out to peers to have it reviewed (your peers, i.e. your time). If the paper is accepted for publication, the journal will then do the layout and insert the figures etc (their time). Then, after you OK the galley proofs, it will be published. For this, you have to pay page charges (up to $90 a page, color figures cost extra). You will have to order reprints, another $700 maybe. And your work is published in the prestigious journal, of which you will need a subscription (quite expensive) to view the results.
Summing it up, the researchers spend a lot of time, money and good-will on the publications, whereas the involvement of the journal publisher is not that great after all.
I work in the molecular biology field myself (which the article is relating to) and we have often jokingly considered opening up a journal, since this is a way to make money without much effort... everything is done and paid for by others. While I am sure journals aren't exactly pots of gold, the distribution of who does what and who pays for what is a little odd.
not to be pedantic, but the internet was born of the arpanet and released to the public in the 80's...
I know, but as you say, it was made public, later. And the web was actually developed in Switzerland, and released to the public. I don't think it matters where things were developed as long as they are officially made publicly available later.
I'm sure if you read through the charter, you'll see it all in black and white
Can't seem find their charter on the site right now, but their fact sheet states that: ICANN has been recognized by the U.S. and other governments as the global consensus entity to coordinate the technical management of the Internet's domain name system, the allocation of IP address space, the assignment of protocol parameters, and the management of the root server system..
Recognizing them as the consensus entity != interfering with their decisions in my mind... but legally, you might be right...
Whether you like ICANN or not, they have been assigned as the authority on domain names and suchlike. They're an international, privatized corporation.
Let's face it, the internet is an international network, not something made by US americans for US americans (Yes, you are guessing right, I am not american).
So I really don't think that the US congress should have any saying or legislative powers whatsoever as to which TLDs exist and which do not. Because if they should, every other government on planet earth should be allowed to do the same. Let the ICANN be the global consensus authority it should be, for that's what is necessary, a consensus.
Slashdot Mirror
An analogy: ... a little fast forward and see, it regenerates. Apples forever and ever.
An apple is something that can regenerate. You can plant the seeds in the ground, wait for the tree to grow zzzip
But after a while you find out that you didn't really want apple pie, you hate the taste, you'd rather have a pear pie. No way to get a pear from your apple tree.
Or, you're not the best gardener in the world (like me) and your first attempts at growing the apple tree don't really work, so you need more apples as starting material.
Hm, is that understandable or did I mess up my analogy? ;)
If only my pizza would be brought by a Deliverator, now ... and within 30 minutes, please!
You are right...its not strictly about patents but the fact that people have been using "stuff" from *other people* for "fun and profit" even though it might not be intended that way.
I agree. I am very much against gene patents, in the least since there is no invention behind it. In my mind, a patent must have an invention behind it (OK, not necessarily true in US patent law, I know). After all, that's what is the essence of it, not a discovery, but an invention ... not chance, but skills.
At the same time, I think, however, that in the same line of reasoning, you don't hold the rights to your own genetic material. You didn't invent it, if anybody, it should be your parents and their decision to have sex at a specific time, chosing a specific pair of egg and sperm, which before had undergone genetic recombination in a certain way. Since you can hardly influence that, your DNA IMHO is not your intellectual property. They (the researchers) shouldn't own the rights, in the same way, you can't hold the rights. They should be public is what I am trying to say.
And considering the Moore story, I have read about that, too. And I don't like at all what happened there. But it's like everywhere in life, there are morally bad researchers and better ones. So I think we have to look at these stories put into a larger perspective, and in that way, we are not faring all too bad.
This article shows some anicetoded stuff. Stuff from companies rediculously overcharging just to test for a gene that causes life threatening problems(just the test...not even close to a cure) to limitations on the number of tests per year in the hopes they can get a profitable business deal out of it.
Lets say you are a university researcher(you claim to be) and you want to do a study genes and breast cancer. Oops! You can't do that because according to Myriad Genetics, which holds a bunch of patents on genes responsible for breast cancer, they control that stuff.
Oops, too, that is not true. You are allowed to do as much research as you like. You are not allowed to commercialize your results without a license from Myriad, however. But using the patented genes for studies or truncation assays or or or is perfectly legal in academic research (to my state of knowledge) There are plenty of academic research projects on BRCA1 (the gene Myriad patented), just have a look on PubMed for BRCA1.
How many projects had to be scrapped because they by accident stumbled into a gene someone patented and couldn't get or afford permission to continue work?
Again, none if you do research for the sake of gaining knowledge. If you want to start a company on your findings, then, yes, time to change projects ... But I think the ethical debate we're having is about research itself, no?
I hope I contributed something informative, and not just flamebait :)
This story is _not_ about patents, not at all.
People have come forward to hospitals saying "I should be dead but I've developed an honest resistence to [nasty disease]". Doctors run said person's blood and other private bodily fluids off to some lab somewhere, make patents, write papers, and get famous while the original people who were honestly trying to selflessly save the lives of others is completely left out(...).
Could you please back this up with some actual information, i.e. facts?
Any law that make it illegal to check your body, the most private property on the face of the planet, is inherrantly wrong! Why do we continue to let these pharma companies do this? They claim "..it costs money to do gene research blah blah blah.."
What law are you talking about?
And actually, while I see your point somewhat, don't forget that the development of a new drug takes 15-20 years, involves a lot of researchers (who expect a paycheck), expensive instruments, reagents, incredibly expensive clinical studies. The pharma company expends all of this in advance, and when a drug gets on the market, they'll have only a few years before the drug can be legally copied. And they want some return on investment. This is what makes drugs so expensive.
You might think that the big work is done when your person walks in to the doctor with her strange resistance, but it's not ... It's just the beginning of a multi-year/multi-million dollar process.
disclaimer: I am a university biologist, not connected with industry in any way
Hmmm
Of course, there is the other issue, which is: How many novel findings have been made with these cells, could they have been obtained without them, and has any of these findings produced something with commercial value.
This is always an issue with basic research, in itself it generates nothing of commercial value, but the insights might lead to an idea for an anti-cancer drug or whatever. Now, where do you draw the line? Can you really still directly attribute a new drug to the very HeLa cells, with which somebody did some research maybe twenty years before, not related to that drug discovery (the time-to-market for novel drugs is somewhere between 15 and 25 years)
I think there is another point that gets lost when you read the original article: While HeLa cells were the first immortalized cell line, there are many others now on the market, so the cells are not quite as unique as the article makes you believe.
(...)but I still think it's sad that Henrietta Lacks' contribution was never recognized and someone else got the glory. ...
Well, in the biology crowd, the name Henrietta Lacks certainly is known, even though her story is often told as an anecdote. But more recognition in the public would be certainly nice. On a side note, since then, researchers have agreed not to name derived cell lines after the patients they were obtained from (as in HeLa). This was decided on in an effort to keep the cells name separate from any individuum, for whatever that's worth
welllll ....
Who is making money off these cells? I know the piece this story links to is a bit confusing, but I can assure you that there's no-one out there making money off the cells. As someone pointed out, they are available by the ATCC (American Type Culture Collection) for $167. This is not a lucrative business, I would assume it about covers their costs of storing the cells and administrative efforts.
Also, when you (as a researcher) buy a vial of these cells, you can make your own stocks. Indeed, probably, you wouldn't even have to order them, somebody in your institute probably has a stock she's willing to share.
Invaluable research tool - yes
Lucrative business - definitely not(so far at least)
The argument that it isn't my money we're talking about was brought up before and the way I originally meant it is explained by me and others in the replies. I don't want to add to that except that in my case (a Ph.D. student), talking about "job" and "paid" is relatively sarcastic. We definitely don't do it for the money, but to get it over with and move somewhere else (many even move out of mol.bio.) where you get "real money".
I grant that publishers do the work of publishing and should receive recompensation for it. I concur that nobody would do their work for free. What is odd is that the researcher pays to publish and pays to read afterwards. And that it's expected for a researcher to do part of the journal's job, for free (I am talking about peer review).
I compared costs to the researcher/grant agency and costs to the publisher.
Okay, so an individual subscription for Cell, one of the prestigious ones, would be $230 for me (international price). An institutional subscription is $800. And that's without online access, this costs extra. Another perstigious journal would be Nature, there, it's $163 for a personal subscription(again, only the print issue)... couldn't find the institution rates right now.
While you might say, after all, that's not so expensive, remember that a well-stocked library must keep subscriptions to many publications (my estimate would be at least 50 to 100 to be current on molecular biology), since relevant articles are published in diverse journals.
Hope that helps a little
Currently, Eisen said, "We volunteer the material, the reviewing, the editing, and then we pay to get access to it"--a process he likened to a midwife who delivers a baby and then charges its parents to visit it. "
It is worse:
As a researcher, you do your research (your money and time), then you write it up in a suitable format for the journal you consider submitting it to (your time) and the guidelines to authors are sometimes quite intricate to get right. Next, you submit it to the journal, maybe even by FedEx or similar (your money). After the editor receives the manuscript, he is going to send it out to peers to have it reviewed (your peers, i.e. your time). If the paper is accepted for publication, the journal will then do the layout and insert the figures etc (their time). Then, after you OK the galley proofs, it will be published. For this, you have to pay page charges (up to $90 a page, color figures cost extra). You will have to order reprints, another $700 maybe. And your work is published in the prestigious journal, of which you will need a subscription (quite expensive) to view the results.
Summing it up, the researchers spend a lot of time, money and good-will on the publications, whereas the involvement of the journal publisher is not that great after all.
I work in the molecular biology field myself (which the article is relating to) and we have often jokingly considered opening up a journal, since this is a way to make money without much effort ... everything is done and paid for by others. While I am sure journals aren't exactly pots of gold, the distribution of who does what and who pays for what is a little odd.
I know, but as you say, it was made public, later. And the web was actually developed in Switzerland, and released to the public. I don't think it matters where things were developed as long as they are officially made publicly available later.
I'm sure if you read through the charter, you'll see it all in black and white
Can't seem find their charter on the site right now, but their fact sheet states that: ICANN has been recognized by the U.S. and other governments as the global consensus entity to coordinate the technical management of the Internet's domain name system, the allocation of IP address space, the assignment of protocol parameters, and the management of the root server system..
Recognizing them as the consensus entity != interfering with their decisions in my mind ... but legally, you might be right ...
Let's face it, the internet is an international network, not something made by US americans for US americans (Yes, you are guessing right, I am not american).
So I really don't think that the US congress should have any saying or legislative powers whatsoever as to which TLDs exist and which do not. Because if they should, every other government on planet earth should be allowed to do the same. Let the ICANN be the global consensus authority it should be, for that's what is necessary, a consensus.