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The criticism of the close to fraudulent cancer treatment scam operated by the Burzynski Clinic that I have covered in some earlier posts (here, here), due to its attempt to silence public criticism through legal threats and general bullying and harassment, needs to shift focus. We know that what the clinic does is a confidence scam of a classic type: The necessary confidence-part is secured by conveying an impression of offering a "last hope" experimental treatment to desperate cancer patients and their close ones (while what one is actually offering is a procedure that has been experimental for three decades and not been shown to have any sort of effect in spite of all these years of research devoted to that end). The actual scam is the appallingly high price charged for the FDA-approved chemotherapy treatment that has to accompany the experimental one, lest the clinic would be clearly guilty of severe malpractice. But, as I said, this is now well-known and need not be further supported, besides mentioning some additional details that have surfaced lately, such as the disastrous track-record of the Burzynski clinic's clinical trials and the piquant fact that those who want to make donations to support the clinic's research are asked to wire the money directly not to the clinic or its attached research center, but to the dear Dr. Burzynski himself, and the fact that said Dr. Burzynski is under investigation for rather serious misconduct by the Texas Medical Board.
But let's not once again lose ourselves in what we already know, but ask the question: what makes the scam possible? One, of course, is the combination of the quite understandable desperation of anyone who has been struck by the information that one or one of one's close ones has incurable, terminal cancer – this is the source of there being a prey for the Burzynski vulture-strategy. Second, equally obvious, the complete ruthlessness of the clinic itself and , at least, its leadership and its medical and management staff. But the fact is that that the clinic is extended ample help and support from two directions that are not equally obvious or expected.
One of these is "old" mass media. What started the whole story this round was an article in the UK newspaper The Observer, promoting a charity call for financial support of a family that wanted to take their sick child into the Burzynski program, but couldn't afford it (no wonder!). It was blog posts (primarily this one and this one) reacting to the fact that an otherwise respectable newspaper in this way made itself into a mindless megaphone of a quack-scam that attracted the wrath of the Burzynski Clinic, eventually leading to the ensuing threats and harassment. Later, it has been discovered, that the very BBC choose to publish a more or less similar item. Quite recently, The Evening Standard (also the UK) made a rather similar publication, wording its article carefully to make the facts about the Burzynski treatment look dubious and inconsequential by placing the word 'unproven' last in the article and surrounding it with square quote-marks (thus implicitly conveying the message: 'that's the establishment using fancy words to hide the fact that they don't care about seriously ill children'). Representatives of all publishers have defended the publication of their articles (here, here and here), but seem not to understand what they have been doing – which is making themselves into marketing tools of the confidence scam of the Burzynski Clinic for the prospect of attracting a few more readers. They all refer to a "human interest" reason for publication, but this falls apart as soon as one sees through the shallow, shiny coating that makes the Burzynski Clinic remind of a respectable health care institution at first glance. This is simply bad news-evaluation, poor research and bad publication judgement. Unless, of course, there are deals under the table that would at least make the publication make short-sighted financial sense. In either case, I fully concur with Josephine Jones' conclusion that the publications are immoral.
The other source of support comes from the U.S. Food and Drug Administration, FDA. This was a theme of the criticism that was pursued by Oxford University neurolopsychology professor and popular author Dorothy Bishop early on and which I mentioned in my first post on Burzynski. With all the threats and harassment against bloggers, however, it sadly disappeared as a major theme in the discussion. For, this is a fact: one thing that makes the Burzynski Clinic scam possible to run within the limits of the law is the fact that FDA has been continuously granting the clinic permission to run clinical trials for several decades. This despite the set-up of the scam operation, where these trials are systematically exploited to press enormous amounts of money off of desperate and vulnerable people. There are three very good reasons for why this should make the FDA retract all trial permissions.
First, one may plausibly argue that what the Burzynski Clinic does is to use the hugely elevated charge for regular chemotherapy to cover the costs of the clinical trials, which means that what people are in fact paying for is to be allowed to participate in experiments with unproven procedures. But this goes against all minimally decent research ethical standards. When a patient participates in a clinical trial, it is the the patient who is doing the clinic running the trial a service, not the other way around. If anyone should be payed anything, it is the patient who should receive and the clinic that should give.
Second, the confidence scam is by itself reason enough to withdraw permissions. Someone may try to argue that, for a private health care institution, it is not wrong or unreasonable to cover costs of research by distributing them in the form of a price increase on offered services (that's a bit like viewing research as a part of the overhead). However, in the case of the Burzynski Clinic, this argument is unavailable for two reasons. One, the clinic offers but two services: regular chemotherapy on its own, or chemotherapy plus the experimental procedure, and it is the price of the latter that is elevated. Two, the clinic's marketing shows that in reality the research and the regular clinical practice cannot be separated. The Burzynski Clinic has but one service on offer: regular and approved chemotherapy with add-on of an experimental procedure. From whatever side one looks, this is a clinical trial, and that is what the clinic charges for.
Third, the track-record of both the past research of the clinic and the scientific publication of Dr. Burzynski himself is, in combination, a rather serious reason for doubting both the scientific basis for viewing the research as defensible in the first place, and the competence of the Burzynski Clinic team to conduct it. Add to this the investigation of the Texas medical Board mentioned above, and you can add reason to doubt the scientific, medical and ethical integrity of the research leader.
If the FDA was to decide to review the entirety of this complex of reasons, I'm quite sure that they would indeed find cause to revoke the permissions for conducting clinical trials granted to the Burzynski Clinic. And if not that, so at least reasons for changing some of its regulation so that a decision to revoke could indeed be supported. In effect, there are very good reasons to pressure the FDA on this point. Not being a US citizen, I myself do not feel well placed to figure out the best strategy for doing that in an effective manner (petitions? open letters? formal complaints?....), but if someone better placed takes an initiative, I would be more than happy to get on the wagon!
Saturday, 17 December 2011
Sunday, 11 December 2011
COP-17: Brazil, China, India, South Africa and USA Wearing the Dunce Cap, Europe the Jester's
Some of you may know that this has happened to become a bit of yearly feature – me commenting on the latest climate policy debacle happening as clockwork this time of year. Earlier posts are here and here. Sources for getting to know about the outcome of this year's COP are here, here, here, here, here, here (last three international, more below).
To summarise, the outcome of COP-15 in Copenhagen in 2009 was nothing except that everyone agreed to keep meeting and that having a climate change policy deal capable of stopping the increase of the global mean temperature at 2°C is an important target. In Cancún last year (COP-16), not even that happened, since Bolivia declined to sign on to continued talks. What did happen, though, was a sort of thing that ended up as the main product of this year's talks, namely agreement not on any policy, but on the practical structure of continued talks. In the COP-16 deal, this agreement was restricted to the way of handling the most difficult questions of all, namely the distribution of the costs of climate change policy (emission reductions as well as adaption to inevitable natural changes); which is planned to be dealt with through a special fund.
This year, nothing more about this fund was said (such as how it is going to become filled with money), but a similar empty institutional form has been set up for the entirety of the continued process, planned to lead to an agreement on emission reductions in 3 years. In short, instead of yearly meetings at the highest levels, there will be a committee that will work for almost 3 years to tailor an agreement and a new COP-meeting in 2015 where, hopefully, the committee can present a substantial deal about climate policy rather than meeting policy that all countries are willing to sign on to. This is the "roadmap" that is presented as the success of COP-17 in Durban.
As, usual, if the expert commentators are to be believed, this agreement, is full of ambiguities, grey areas and explicit holes, but that goes with the territory of international agreements. However, what it effectively does is to reduce the number of opportunities for the global community to actually agree on something with any chance of reaching the goal of no more than 2°C increase of the global mean temperature from three to one. After 2015, experts advise us that we will have to start calculating with more drastic average global temperature increases even if very effective policies for reducing greenhouse gas emissions are eventually put into motion. Now, the 2° target, it must be understood, is not in any way magical or set in stone. In fact, some claims it to be a much too allowing goal. Moreover, the target is rather a range than an exact temperature, since the climate models necessarily embody rather drastic uncertainties. But the 2°C is of importance for two reasons. First, it is one of the very few substantial things about climate policy that the global community has been able to agree on. Second, it approximates the limit of our empirical knowledge from the past and, thus, our basis for prediction, preparation and adaption in face of the various changes that increases of the global mean temperature bring. A bit simplified, beyond 2°C, what we have is basically mathematics and fantasy – something that is amply illustrated by the predictive models in climate change research. Our ability to prepare for whatever will be coming – and thus to be capable of reversing the process without considerable higher cost to human life and well-being – becomes drastically weakened. So, seen in this light, the bare bones of COP-17 is that such a prospect has become 66% more likely by agreeing on one attempt to agree rather than three.
Now, if any politically minded person reads this, he or she will probably protest. The reasoning above ignores that the model of yearly meetings at the highest level has a solid record of failure, and that the Durban roadmap means that a committee will be working for three years before the next meeting. This is a big different to the situation where initiatives were left to individual countries or leagues of such. They will say: the basic problems – the unwillingness of high emission countries to commit to the needed reductions and the unwillingness of rich countries to face the fact that if they do not pay for the needed measures, no one will – necessitates that whatever proposal is presented at the next meeting is well worked out in the eyes of all sides and parties. I accept this logic of the pragmatics of politics, but I am skeptical about the conclusion. In fact, when not having the spotlights of the world stage on them, isn't it even more likely that high emission countries will continue to press even more heavily the rest for more concessions and rich countries do the same to less rich ones? Then, when the result is on the table, all that will remain is the window-dressing that makes it look OK in the eyes of the public, while under the shiny surface mostly expressing short-term and, in this context, petty national interests. In short, committee, fine – but let's speed up and have one working while keeping on having at least one high-level meeting every year to ensure public and critical scrutiny the whole way!
Looking at things from that angle, however, implies a standpoint that fit most politicians pretty bad. It means, for example, acknowledging that this year's COP meeting, just as the former ones, was a massive failure. Not, as this commentary from UK Energy Secretary Chris Huhne tries to spin, a series of successes. Why is this so repugnant to a politician? Well, basically, because of two things. First, in the current situation, where the unholy CO2 emission alliance of Brazil, China, India, South Africa and the USA, are allowed to keep bullying the rest of the world, everything that is an avoidance of total disaster is possible to hold out as success. This is what the statements of Secretary Huhne and a whole band of European politicians are illustrating today. The presence of the climate policy boogeyman (i.e. above mentioned countries) is used to make oneself appear as a hero when, in fact, what has occurred is that one has let oneself be pressed one more notch in the shortsighted game of chicken played by these countries. In this game, apparently, Europe and the rest of the Kyoto-protocol signing countries are allowing themselves to become what game theorists know as money pumps – someone who is applying a strategy that makes one systematically vulnerable to making deals that sum up to a loosing position, while one's counterpart is systematically winning, although each singular deal may look like a winner. Giving in to blackmail (which is, effectively, what Europe is doing in the climate policy negotiation game) is a prime example.
On a larger scale, what is achieved by the Eurpean (plus Canada and Japan) strategy is the following: Brazil, China, India, South Africa and the USA can go hone from Durban, as they could from Copenhagen and Cancún, telling their people that all is well and that they needn't worry. They don't have to tell them that they need to change their expectations to future material growth, the price of energy or anything like that. Why not? Because they have ample evidence that they can press other countries to pay all those bills the day when they arrive. In effect, we may expect no, repeat no, preparation on the political home-fronts of these countries for a climate deal in 2015 which implies making actual concessions and taking on actual commitments. This, I claim, is the main result of the strategy of the EU and the rest of the world in Durban. So ask yourself, how likely does a substantial climate policy deal in 2015 look in that light?
Good work, Europe!
To summarise, the outcome of COP-15 in Copenhagen in 2009 was nothing except that everyone agreed to keep meeting and that having a climate change policy deal capable of stopping the increase of the global mean temperature at 2°C is an important target. In Cancún last year (COP-16), not even that happened, since Bolivia declined to sign on to continued talks. What did happen, though, was a sort of thing that ended up as the main product of this year's talks, namely agreement not on any policy, but on the practical structure of continued talks. In the COP-16 deal, this agreement was restricted to the way of handling the most difficult questions of all, namely the distribution of the costs of climate change policy (emission reductions as well as adaption to inevitable natural changes); which is planned to be dealt with through a special fund.
This year, nothing more about this fund was said (such as how it is going to become filled with money), but a similar empty institutional form has been set up for the entirety of the continued process, planned to lead to an agreement on emission reductions in 3 years. In short, instead of yearly meetings at the highest levels, there will be a committee that will work for almost 3 years to tailor an agreement and a new COP-meeting in 2015 where, hopefully, the committee can present a substantial deal about climate policy rather than meeting policy that all countries are willing to sign on to. This is the "roadmap" that is presented as the success of COP-17 in Durban.
As, usual, if the expert commentators are to be believed, this agreement, is full of ambiguities, grey areas and explicit holes, but that goes with the territory of international agreements. However, what it effectively does is to reduce the number of opportunities for the global community to actually agree on something with any chance of reaching the goal of no more than 2°C increase of the global mean temperature from three to one. After 2015, experts advise us that we will have to start calculating with more drastic average global temperature increases even if very effective policies for reducing greenhouse gas emissions are eventually put into motion. Now, the 2° target, it must be understood, is not in any way magical or set in stone. In fact, some claims it to be a much too allowing goal. Moreover, the target is rather a range than an exact temperature, since the climate models necessarily embody rather drastic uncertainties. But the 2°C is of importance for two reasons. First, it is one of the very few substantial things about climate policy that the global community has been able to agree on. Second, it approximates the limit of our empirical knowledge from the past and, thus, our basis for prediction, preparation and adaption in face of the various changes that increases of the global mean temperature bring. A bit simplified, beyond 2°C, what we have is basically mathematics and fantasy – something that is amply illustrated by the predictive models in climate change research. Our ability to prepare for whatever will be coming – and thus to be capable of reversing the process without considerable higher cost to human life and well-being – becomes drastically weakened. So, seen in this light, the bare bones of COP-17 is that such a prospect has become 66% more likely by agreeing on one attempt to agree rather than three.
Now, if any politically minded person reads this, he or she will probably protest. The reasoning above ignores that the model of yearly meetings at the highest level has a solid record of failure, and that the Durban roadmap means that a committee will be working for three years before the next meeting. This is a big different to the situation where initiatives were left to individual countries or leagues of such. They will say: the basic problems – the unwillingness of high emission countries to commit to the needed reductions and the unwillingness of rich countries to face the fact that if they do not pay for the needed measures, no one will – necessitates that whatever proposal is presented at the next meeting is well worked out in the eyes of all sides and parties. I accept this logic of the pragmatics of politics, but I am skeptical about the conclusion. In fact, when not having the spotlights of the world stage on them, isn't it even more likely that high emission countries will continue to press even more heavily the rest for more concessions and rich countries do the same to less rich ones? Then, when the result is on the table, all that will remain is the window-dressing that makes it look OK in the eyes of the public, while under the shiny surface mostly expressing short-term and, in this context, petty national interests. In short, committee, fine – but let's speed up and have one working while keeping on having at least one high-level meeting every year to ensure public and critical scrutiny the whole way!
Looking at things from that angle, however, implies a standpoint that fit most politicians pretty bad. It means, for example, acknowledging that this year's COP meeting, just as the former ones, was a massive failure. Not, as this commentary from UK Energy Secretary Chris Huhne tries to spin, a series of successes. Why is this so repugnant to a politician? Well, basically, because of two things. First, in the current situation, where the unholy CO2 emission alliance of Brazil, China, India, South Africa and the USA, are allowed to keep bullying the rest of the world, everything that is an avoidance of total disaster is possible to hold out as success. This is what the statements of Secretary Huhne and a whole band of European politicians are illustrating today. The presence of the climate policy boogeyman (i.e. above mentioned countries) is used to make oneself appear as a hero when, in fact, what has occurred is that one has let oneself be pressed one more notch in the shortsighted game of chicken played by these countries. In this game, apparently, Europe and the rest of the Kyoto-protocol signing countries are allowing themselves to become what game theorists know as money pumps – someone who is applying a strategy that makes one systematically vulnerable to making deals that sum up to a loosing position, while one's counterpart is systematically winning, although each singular deal may look like a winner. Giving in to blackmail (which is, effectively, what Europe is doing in the climate policy negotiation game) is a prime example.
On a larger scale, what is achieved by the Eurpean (plus Canada and Japan) strategy is the following: Brazil, China, India, South Africa and the USA can go hone from Durban, as they could from Copenhagen and Cancún, telling their people that all is well and that they needn't worry. They don't have to tell them that they need to change their expectations to future material growth, the price of energy or anything like that. Why not? Because they have ample evidence that they can press other countries to pay all those bills the day when they arrive. In effect, we may expect no, repeat no, preparation on the political home-fronts of these countries for a climate deal in 2015 which implies making actual concessions and taking on actual commitments. This, I claim, is the main result of the strategy of the EU and the rest of the world in Durban. So ask yourself, how likely does a substantial climate policy deal in 2015 look in that light?
Good work, Europe!
Friday, 9 December 2011
Videos from The Philosophy of Hate Crime Symposium.
As some of you may recall, in a post earlier this fall, I shared videos from a symposium arranged by a project I'm working in on the basis for European hate crime policy, and informed about a 2nd symposium on philosophical issues actualised in that context that we arranged here in Gothenburg. Even earlier I have made a few posts on issues actualised by the project (on the relation between hate crimes and human rights and on the role of prevention in a sound hate crime policy) and pointed to many more at the blog of my colleague David Brax.
We are now happy to be able to share videos of almost all of the presentations and attached discussions that took place during the Philosophy of Hate Crime Symposium, arranged by David and me at the University of Gothenburg a few months ago. As I myself fell ill on the 2nd day, you will only see me appear in the introduction, but David does a splendid job of holding together by himself what was originally our shared presentation on such short notice in the last video below.
One of the more nice things that I noticed when watching this footage right through was how surprisingly well it captures the atmosphere and spirit at what was a bona fide research workshop, rather than a public engagement event put together for that particular purpose. What you see is an example of what goes on in the laboratory of a research unit in the humanities and social sciences, basically. Welcome to take a peak!
1. Anthony Mark Cutter & Christian Munthe: Introduction to When Law and Hate Collide
2. Paul Iganski: How Hate Hurts: The Moral Philosophical Basis of Hate Crime Laws
3. Barbara Perry: Moving Beyond "Hate" Crime
4. Neil Chakraborti: Targetting Vulnerability - A Fresh Set of Challanges for Hate Crime Scholarship
5. Heidi Hurd: Criminalizing Hate, Criminalizing Character
6. Mohamad Al Hakim: Hate as an Aggravating Factor in Sentencing
7. Antti Kauppinen: Two Kinds of Expressive Harm
8. David Brax: A Tentative Philosphical Framework for Hate Crime Policy Across the European Union
We are now happy to be able to share videos of almost all of the presentations and attached discussions that took place during the Philosophy of Hate Crime Symposium, arranged by David and me at the University of Gothenburg a few months ago. As I myself fell ill on the 2nd day, you will only see me appear in the introduction, but David does a splendid job of holding together by himself what was originally our shared presentation on such short notice in the last video below.
One of the more nice things that I noticed when watching this footage right through was how surprisingly well it captures the atmosphere and spirit at what was a bona fide research workshop, rather than a public engagement event put together for that particular purpose. What you see is an example of what goes on in the laboratory of a research unit in the humanities and social sciences, basically. Welcome to take a peak!
1. Anthony Mark Cutter & Christian Munthe: Introduction to When Law and Hate Collide
2. Paul Iganski: How Hate Hurts: The Moral Philosophical Basis of Hate Crime Laws
3. Barbara Perry: Moving Beyond "Hate" Crime
4. Neil Chakraborti: Targetting Vulnerability - A Fresh Set of Challanges for Hate Crime Scholarship
5. Heidi Hurd: Criminalizing Hate, Criminalizing Character
6. Mohamad Al Hakim: Hate as an Aggravating Factor in Sentencing
7. Antti Kauppinen: Two Kinds of Expressive Harm
8. David Brax: A Tentative Philosphical Framework for Hate Crime Policy Across the European Union
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