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Rory
Post  Post subject: Cancer research: Incompetence on an International Scale  |  Posted: Thu Sep 04, 2014 12:55 pm
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I propose a grand experiment, that is going to cost billions (trillions?) of GBP/US dollars... and over a 40 year period of phrenetic activity and hard work will have a 5% success rate... the money will prop up an industry whose sole objective is to watch the bottom line regard;ess of agreed definitions of 'success'... the people entrusted with carrying out the work and policing the financing will depend for their subsistence on the continued flow of work, regardless of its efficacy or otherwise in achieving success.

Sound familiar?

Anybody want to invest?

What is the point of keep throwing time and money at the field of cancer research when nobody actually saves a life? Maybe they'll produce some nice shiny publications, hold their next conference in a more exotic location with a better spread than last year...

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Prometheus
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sat Sep 06, 2014 10:59 am
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Sounds like some bitter personal experience? Or something more tangible?


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Rory
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sat Sep 06, 2014 12:22 pm
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A close family friend, aged in her mid-50s, has recently died of a brain tumour.

For all that the CRUK and indeed international cancer research charity rhetoric bangs on and on about the necessity of increased funding and time, they never actually seem to achieve much from a translational point of view. Molecular differences between normal and cancerous tissue are interesting, but so long as they remain in the academic literature only, rather than informing the development of clinically efficacious treatments and cures (yes, I will talk of a universal cure, because unlike the frontline scientists, I think cancer patients deserve us to be working towards this in both expectation and deed) then it makes no difference to the cancer patient.

No amount of publications on their own are going to help the cancer patient. They certainly didn't help my neighbour, who over a period of two years became progressively immobilised, gradually lost her speech and motor functions, while for a long time remaining lucid enough to appreciate the death sentence and accompanying lingering suffering in store for her.

I don't know if the issue is that cancer researchers and big pharma simply do not care about the suffering of cancer patients, or if they are simply incompetent, but one thing is for sure - when 'success' is defined as reducing cancer mortality rates, they are failing on all accounts.

Why are we, like crazy people, continuing to pour money into doing the same thing that we have been doing for decades, and to no avail? It is my opinion that the researchers and individuals working in big pharma have too many conflicting interests to be able to unblind themselves to the fact that the current strategy is not working. Researchers need continued funding to fuel their bodies, pay their mortgages, feed their kids, keep the wife/husband happy, feed their own ego (it's true), and generally keep their careers alive. Big pharma only care about generating profit, and would probably rather push a biosimilar that is vaguely useful in extending the lifespan of terminal cancer patients by 6 months or so - if it generates for them a few million dollars - than develop a genuinely efficacious universal cure for cancer, which would threaten their own financial interests.

THE SYSTEM ISN'T WORKING GUYS. THE EVIDENCE IS ACROSS THE ROAD - WELL, ACTUALLY, NOW LYING IN A CHAPEL OF REST.

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Prometheus
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sat Sep 06, 2014 10:36 pm
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Sorry for your loss.

There's a lot of complex issues you touch upon, most of them are simply beyond me, but i will opine on a few anyway.

Translational medicine is awful. They attempt to train doctors to be scientists and it just doesn't work for some reason. That is why benchside never reaches bedside. I would like to see an expansion of interdisciplinary research teams. It worked with penicillin all those years ago, but for inexplicable reasons medicine doesn't collaborate much with scientists.

Haven't looked at the figures but looking at success rates might be difficult. More people survive cancer, or live longer with cancer than before. But more people are getting cancer because we have successfully extended lifespans. There are certainly improvements, even if they are slow.

Whether pharma muddies the waters, hmm... no comment.

But we aren't going to 'cure' death anytime soon. Which brings me to my final point about end of life care. It's rubbish. The focus is all on cure, and anything less is a failure. There is such a thing as a good death, at least relative to other ways of dying. With all the focus on avoiding death at all costs, this gets overlooked - for this modern nursing is at least partly culpable.


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Rory
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Wed Sep 10, 2014 1:49 pm
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Prometheus wrote:
Translational medicine is awful. They attempt to train doctors to be scientists and it just doesn't work for some reason. That is why benchside never reaches bedside. I would like to see an expansion of interdisciplinary research teams. It worked with penicillin all those years ago, but for inexplicable reasons medicine doesn't collaborate much with scientists.


Some doctors clearly do make inroads into basic and translational research – I don’t think it is beyond the wits of medical doctors to achieve this, and in fact I think the vast majority of the population are sufficiently intelligent as to be able to understand the principle of clinical trials and the molecular biology of various diseases, if well explained and providing that their attention is first engaged. It isn’t exactly rocket Science. In fact, I think it would be a sensible idea to democratise Science. At the moment, all of the decisions regarding research strategy and expenditure in cancer research are determined by predominantly white, middle class, highly educated men aged in their 50s. However, it seems to me, that the best and most innovative ideas are not likely to be housed exclusively in the minds of this section of society. A new graduate is just as likely to have interesting and translationally relevant ideas as to how to reduce cancer mortality rates, as is a well-seasoned researcher. In fact, younger people and those typically excluded from strategic meetings (ethnic minorities, women, anyone below age 40) are less likely to be constrained by their own financial interests or with considerations of doing what is ‘safe’ (Science that adds on a hair’s breadth to the academic literature) in order to protect their own tenure and are more likely to care about doing what is best for patients – who, effectively, fund the research in one way or another. It is to patients that we ought to be answerable, not to our wives or husbands or our own bank balance or the pressures put upon us by big pharma. If it doesn’t have a realisitic prospect of saving lives, then frankly in my opinion, it is not worth doing, at least not so far as cancer research is concerned.

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Prometheus wrote:
Haven't looked at the figures but looking at success rates might be difficult. More people survive cancer, or live longer with cancer than before. But more people are getting cancer because we have successfully extended lifespans. There are certainly improvements, even if they are slow.


Yes, there are improvements afoot, but it is the pace of change that renders that gradual improvement more of a failure, or impotence at best. If I said to you, sorry the trains are running late, but yours will be with you in 12 hours, would you regard that as a ‘success’ for the train company? Why do we accept less from charities and researchers?

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Prometheus wrote:
Whether pharma muddies the waters, hmm... no comment.


Of course they do. They will never be helpful in serving the interests of patients so long as they are rewarded financially for introducing and patenting any new drug (including those that are better than nothing but not better than the current standard treatment, even if the standard treatment is cheaper than the ‘new’ drug). The only way in which they could be useful is if their proven track record in delivering a reduction in cancer mortality rates were to be financially incentivised.

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Prometheus wrote:
But we aren't going to 'cure' death anytime soon. Which brings me to my final point about end of life care. It's rubbish. The focus is all on cure, and anything less is a failure. There is such a thing as a good death, at least relative to other ways of dying. With all the focus on avoiding death at all costs, this gets overlooked - for this modern nursing is at least partly culpable.


This isn’t about ‘curing’ death; it is about curing a group of diseases that cause extreme suffering for the patient – physical, psychological and emotional – and for the relatives and friends of the patient. The disease isn’t trivial – it kills ¼ of us in the West and directly affects 1/3. While the incidence of cancer increases with age, there are many people who lose their life to this disease well before any of us would consider that to have been a ‘life fully lived’ (e.g. those who die aged 65 and below).

I do agree with you that there is great scope for improving end-of-life care. There are ways of reducing pain and giving the patient relative comfort, and indeed counselling them to accept death, so granting the patient dignity at possibly the most difficult time in their life. This, in my view, would also include euthanasia for terminally ill patients.

But I think, as usual, nobody is listening to these arguments. They will probably carry on asserting that any life (even life in a semi-comatose state lying in one fixed position in bed with no motor functions) is sacrosanct and that to deliver a patient from such suffering would be ‘evil’. They will continue to allow research funding and strategy decisions to be made behind closed doors, far away from the patients and donors who so desperately want a universal cure for cancer, by white middle class men aged in their 50s whose ideas have all fallen away by the systemisation of research, and who care more anyway about the survival of their own careers than about the survival of patients.

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bunbury
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Wed Sep 10, 2014 10:26 pm
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There was an interesting article on NPR today discussing the oversupply of laboratory facilities at American universities. It seems there was a huge boost in grant money for biomedical research several years ago which led to a rush to build labs and hire researchers.

Now grant money has partly dried up, researchers have been let go and there is a 50% oversupply of facilities and equipment.

Why did this happen? The business model for university research changed. The model nowadays is likened to a shopping mall where universities build empty stores then look for tenants to fill them. The tenants (scientists) have to pay rent to the university so first they must have their grant money in hand. But the entities doling out grant money are looking for a quick ROI so the research that does get done is focused on quick payback; copycat drugs, popular drugs, Viagra before cancer cures.

In other words, there is no room for long term risky research with an ambitious goal such as curing cancer; it is all about profit and a quick return on investment. The market shall prevail.

http://www.npr.org/2014/09/10/347305805/built-in-better-times-university-labs-now-lack-research-funding


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Rory
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sat Sep 13, 2014 11:25 am
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bunbury wrote:
The business model for university research changed. The model nowadays is likened to a shopping mall where universities build empty stores then look for tenants to fill them. The tenants (scientists) have to pay rent to the university so first they must have their grant money in hand. But the entities doling out grant money are looking for a quick ROI so the research that does get done is focused on quick payback; copycat drugs, popular drugs, Viagra before cancer cures.

In other words, there is no room for long term risky research with an ambitious goal such as curing cancer; it is all about profit and a quick return on investment. The market shall prevail.


Which is why, if the government is serious about commitments to improved cancer treatments (which it ought to be, since regular members of the public are the ones who provide most of the funding to cancer research charities such as CRUK, and it is the taxpayer who deserves to see a tangible return when they use NHS services) - then it would be a good idea for translational research and pharmaceutical research to be carried out under the jurisdiction of public funding bodies rather than big pharma. If the government directly provided grants to individual translational cancer researchers based on their individual track record on reducing cancer mortality then the new market would save lives more efficiently.

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Prometheus
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sun Oct 05, 2014 4:43 pm
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Rory wrote:
Some doctors clearly do make inroads into basic and translational research – I don’t think it is beyond the wits of medical doctors to achieve this, and in fact I think the vast majority of the population are sufficiently intelligent as to be able to understand the principle of clinical trials and the molecular biology of various diseases, if well explained and providing that their attention is first engaged. It isn’t exactly rocket Science.


Chemistry is a science not because of the subject matter (pun not intended) but because of the method used to explore it. Doctors are taught the subject matter not the method, making them poor scientists. In itself this is no bad thing, but when they conduct research it becomes a problem. Either they need to be trained much more thoroughly in science and maths, or they need to work closer with scientists and mathematicians.


Rory wrote:
In fact, I think it would be a sensible idea to democratise Science.


Maybe, but how would this work in practice?

To a degree this happens with cancer research charities, and to the detriment of other diseases. Cancer research attracts millions of pounds due to well run campaigns and a public interest, but diseases less known, but with similar mortality and suffering, receive very little in comparison.

Rory wrote:
Yes, there are improvements afoot, but it is the pace of change that renders that gradual improvement more of a failure, or impotence at best. If I said to you, sorry the trains are running late, but yours will be with you in 12 hours, would you regard that as a ‘success’ for the train company? Why do we accept less from charities and researchers?


It may be that there is no cure for cancer, no matter how much time and money you throw at it. If/when we do cure cancer we will know so much about the genome, immortality will be in reach. The road may be long, because nature is complicated, not because we are not focused enough.

Rory wrote:
The disease isn’t trivial...


Sorry, i wasn't trying to trivialise it, just provide a counter point.

Rory wrote:
They will probably carry on asserting that any life (even life in a semi-comatose state lying in one fixed position in bed with no motor functions) is sacrosanct and that to deliver a patient from such suffering would be ‘evil’.


Social attitudes take time to change, especially around the subject of death which is still taboo. The best way to change about it is to talk openly about it, as we are now. Change will come, just not soon enough for us, or our children.

Rory wrote:
They will continue to allow research funding and strategy decisions to be made behind closed doors, far away from the patients and donors who so desperately want a universal cure for cancer, by white middle class men aged in their 50s whose ideas have all fallen away by the systemisation of research, and who care more anyway about the survival of their own careers than about the survival of patients.


This problem seems more general problem of the commercialisation of the world, of which the scientific community is but a subset?


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Rory
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Sun Oct 05, 2014 8:22 pm
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Prometheus wrote:
Chemistry is a science not because of the subject matter (pun not intended) but because of the method used to explore it. Doctors are taught the subject matter not the method, making them poor scientists. In itself this is no bad thing, but when they conduct research it becomes a problem. Either they need to be trained much more thoroughly in science and maths, or they need to work closer with scientists and mathematicians.


Well, the content of Chemistry is shaped by the process, and if any other method were used to investigate the nature of the material world, the content would change. But I see what you are saying. In itself this incompetence (if so it be), is a worrying thing, because how are doctors supposed to make well-informed decisions about treatment regimens and to assess likely clinical outcomes if they do not understand the methodology of Science and so are not able to critically appraise the multitude of treatment options available? Further training in Science and Mathematics may be preferable because any reliance on a third party (e.g. scientists and mathematicians) is inherently dangerous: how do you know that the scientist/mathematician is competent? How do you know that they are reliable (don’t have some hidden agenda or ulterior motive that affects the independence of the advice they are able to bestow)?

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Prometheus wrote:
Maybe, but how would this work in practice?


Create an online and televised public forum for making the decision in an open public space. E.g. make it compulsory that members of the public complete an online multiple-choice questionnaire rating their opinions on the prioritisation of funding for various areas of basic, translational and clinical research. Leave some open questions for the input of unanticipated opinions and include a ‘white vote’ for those who don’t wish to participate in the process.

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Prometheus wrote:
To a degree this happens with cancer research charities, and to the detriment of other diseases. Cancer research attracts millions of pounds due to well run campaigns and a public interest, but diseases less known, but with similar mortality and suffering, receive very little in comparison.


Which diseases have a similar mortality rate to cancer and are neglected, funding-wise?

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marnixR
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Mon Oct 06, 2014 6:32 am
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Rory wrote:
Which diseases have a similar mortality rate to cancer and are neglected, funding-wise?


ebola ?

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Prometheus
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Mon Oct 06, 2014 10:39 am
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Rory wrote:
Further training in Science and Mathematics may be preferable because any reliance on a third party (e.g. scientists and mathematicians) is inherently dangerous: how do you know that the scientist/mathematician is competent? How do you know that they are reliable (don’t have some hidden agenda or ulterior motive that affects the independence of the advice they are able to bestow)?


My feeling is that doctors have enough on their plates, and inter-disciplinary work is the way forward. Clinician scientists is another way of saying jack of all trades - and while there may be some remit for such a role, specialisation is required such is the detail and complexity of the systems under scrutiny. The key would be getting the balance right.

I like the true story of penicillin - interdisciplinary academically based research at its best. (Awesome film, well worth watching anyway: Breaking the Mould, the story of the discovery of penicillin).

https://www.youtube.com/watch?v=dTlOEjHtkp0

I don't know why you would trust a doctor more than a scientist.

Rory wrote:
Create an online and televised public forum for making the decision in an open public space. E.g. make it compulsory that members of the public complete an online multiple-choice questionnaire rating their opinions on the prioritisation of funding for various areas of basic, translational and clinical research. Leave some open questions for the input of unanticipated opinions and include a ‘white vote’ for those who don’t wish to participate in the process.


I'm fearful research priorities would be led astray by people's obsession with celebrity. Cancer is typically a disease of the affluent (on a global scale), and in the west many celebrities get cancer, then launch funding and awareness campaigns for their type of cancer. This skews public perceptions of disease prevalence and diverts money into diseases suffered by generally more well off people.

Also there is a big enough problem getting people to engage with democracy as it it; adding more minutiae might not help.

Rory wrote:
Which diseases have a similar mortality rate to cancer and are neglected, funding-wise?


It was surprisingly hard to find global data on this. This was the best i could do:

http://ucatlas.ucsc.edu/cause.php
Has a good chart showing top 10 causes of mortality in developed and developing countries. Not sure of the source, but it's similar to what i've been taught in the past.

http://www.ukcrc.org/wp-content/uploads ... -final.pdf
Page 26 has a chart for research funding by disease.

UK cancer research has a significantly higher proportion of spending compared to other diseases. It is nearly 3 times greater than money spent on cardiovascular disease, which in the all cause mortality chart make up the 1st, 2nd and 8th leading cause of death in developed countries.

But generally I agree that some strategy should be devised to how to prioritise health research rather than the ad hoc (free market?) system we currently have.


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Rory
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Mon Oct 06, 2014 3:24 pm
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Prometheus wrote:
My feeling is that doctors have enough on their plates, and inter-disciplinary work is the way forward. Clinician scientists is another way of saying jack of all trades - and while there may be some remit for such a role, specialisation is required such is the detail and complexity of the systems under scrutiny. The key would be getting the balance right.

I like the true story of penicillin - interdisciplinary academically based research at its best. (Awesome film, well worth watching anyway: Breaking the Mould, the story of the discovery of penicillin).

https://www.youtube.com/watch?v=dTlOEjHtkp0

I don't know why you would trust a doctor more than a scientist.


Oh, yes, I wasn’t suggesting that all medical doctors consider also engaging in scientific research – merely that all medical doctors should be sufficiently science-literate to be able to think laterally when current treatment options fail and new treatment options become available. That means being able to critically appraise research literature.

I thought the story of penicillin was that it was discovered more or less accidentally by Fleming?

I didn’t mean to suggest that I would trust a doctor more than a scientist – only that, if I were the prescribing physician with a seriously ill patient in front of me, I wouldn’t be comfortable with trusting a scientist to do all of the thinking for me. Actually, in general, I would tend to trust academic scientists over medical doctors, because scientists are (by the sounds of things) better able to think logically and rationally.

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Prometheus wrote:
I'm fearful research priorities would be led astray by people's obsession with celebrity. Cancer is typically a disease of the affluent (on a global scale), and in the west many celebrities get cancer, then launch funding and awareness campaigns for their type of cancer. This skews public perceptions of disease prevalence and diverts money into diseases suffered by generally more well off people.

Also there is a big enough problem getting people to engage with democracy as it it; adding more minutiae might not help.


No celebrity involvement envisaged; more like, you know the party political broadcasts? Similarly, have the best and most revolutionary ideas (by whomever they were created, not just by middle aged middle class white academics concerned for their tenure – young people have good ideas and the courage and independence to pursue those radical ideas) presented. Allow interested members of the public to vote on research priorities (gets around the voting fatigue issue). And, if anyone is unhappy with the way research funding subsequently pans out, they can always vote at the next periodic ‘election’!

Quote:
Prometheus wrote:
UK cancer research has a significantly higher proportion of spending compared to other diseases. It is nearly 3 times greater than money spent on cardiovascular disease, which in the all cause mortality chart make up the 1st, 2nd and 8th leading cause of death in developed countries.


But the difference between cancer and cardiovascular disease is that, while both are a leading cause of mortality, only cancer is really a cause of prolonged morbidity. Terminal cancer patients are typically left to suffer for a matter of years with no prospect of cure and only the prospect of pain, indignity, discomfort, fear, anxiety, alienation and eventual death. Cardiovascular disease tends to be acute and fatal so there is a very short time period of suffering. For this reason I think that cancer research ought to be a slightly higher priority than cardiovascular disease.

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marnix wrote:
ebola ?


Well it is fairly recent that Ebola has started being a major cause of mortality and there is the development of ZMapp, we will have to wait and see the results of the clinical trials to find out the safety and efficacy profiles of that treatment, but so far it looks promising. Then its production needs to obviously be scaled up.

There is the issue of infectious disease in the developing world, and the fact that people in those countries may be more likely to die by those infectious agents than we would be in the West because we have superior health support resources and hygiene standards which is a consequence of the underlying economic disparity. I guess the reason why non-infectious diseases are better funded is because those countries with the surplus resources to fund research are also those that tend to be plagued by non-infectious disease not infectious disease (i.e. self-interest). This situation is analogous to the hot air balloon dilemma. If faced with the prospect of saving the life of a loved one versus an unknown person, most people would choose to save the loved one. That is no reflection on the actual or perceived relative ‘worth’ of those lives but simply knowing one and not the other, one feels a duty to save the loved one. Death and suffering by non-infectious disease are more visible in the West and hence attract proportionally more funding.

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Prometheus
Post  Post subject: Re: Cancer research: Incompetence on an International Scale  |  Posted: Mon Oct 06, 2014 9:16 pm
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Rory wrote:
...That means being able to critically appraise research literature.


Ostensibly this is taught to all healthcare professionals. My impression though is that it is poorly taught and you end up with very confident professionals who think they understand the scientific process, while actually knowing very little. Medical statistics teaching in particular is abysmal.

"A little learning is a dang'rous thing
Drink deep, or taste not the Pierian spring."

Rory wrote:
I thought the story of penicillin was that it was discovered more or less accidentally by Fleming?


That is just the start of the story, Fleming doesn't feature much thereafter. Watch the film, i think anyone with an interest in science will appreciate it - produced by the BBC i think.

Rory wrote:
No celebrity involvement envisaged; more like, you know the party political broadcasts? Similarly, have the best and most revolutionary ideas (by whomever they were created, not just by middle aged middle class white academics concerned for their tenure – young people have good ideas and the courage and independence to pursue those radical ideas) presented. Allow interested members of the public to vote on research priorities (gets around the voting fatigue issue). And, if anyone is unhappy with the way research funding subsequently pans out, they can always vote at the next periodic ‘election’!


I find all this voting quite cumbersome, and i don't really think it integral to democracy. All we really need is transparency and accountability (voting ostensibly provides accountability, but there might be other ways).

How about some of our income tax can be claimed back if we direct it towards a registered charity. We can choose which charity the taxman sends our rebate. Something like this exists for business not sure about individuals.


Rory wrote:
But the difference between cancer and cardiovascular disease is that, while both are a leading cause of mortality, only cancer is really a cause of prolonged morbidity. Terminal cancer patients are typically left to suffer for a matter of years with no prospect of cure and only the prospect of pain, indignity, discomfort, fear, anxiety, alienation and eventual death. Cardiovascular disease tends to be acute and fatal so there is a very short time period of suffering. For this reason I think that cancer research ought to be a slightly higher priority than cardiovascular disease.


This is a common perception but i think it is a myth. Yes, with cardiovascular disease there is a chance of sudden death, but there is more chance of a prolonged death. A heart attack sufferer may survive years after the event but the heart failure it causes followed by the gradual suffocation as your own bodily fluids fill your lungs will be unpleasant. My least favourite way to die would be surviving a series of strokes until one eventually gets me, though it depends on the type of cancer (the day i'm diagnosed with pancreatic cancer is the day i'm booking flights to Switzerland).

Add to this that end-of-life cancer care receives a lot of attention, while any other way of dying does not (palliative care is synonymous with cancer care for this reason), and i would say there is a disparity of priorities. Palliative should include anyone dying.

(Not trying to say there isn't a lot of suffering involved with cancer - just that there is a lot of suffering with most ways of dying.)


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