I am flabbergasted by the messaging surrounding the new Brain Map Initiative.
If I didn’t know better I would think that neuroscience as a field of inquiry simply did not exist. There is a strong and robust effort in computational, systems, and cognitive neuroscience research ongoing and in fact already doing much of what is being promised. Rockefeller, Harvard, Columbia, Stanford, Salk/UCSD already have huge efforts looking at circuit level neuronal function across model organisms. And this is the tip of the iceberg. There are already hugely expensive functional brain imaging projects. Brain research garners billions of dollars internationally each year. So what is going on? The cynical view is of course that this is simply a resource grab orchestrated by individuals who see an opportunity to increase their influence and stature. And what about all the promises to cure Alzheimer’s, autism, schizophrenia, PTSD, traumatic brain injury? Disease organizations have been buying one magic bullet solution after another for 50 years to what end? Recently the chickens have been coming home to roost with little to show for the billions and billions invested (aside from a very successful jobs program) as many dominant theories fall short. So the cynicism ghost whispers that this is a way to deflect the criticism because this new promise is going to REALLY solve the problems. It is so sad. And saddest of all is that one really does not want to be cynical. Knowledge acquisition and its responsible application is a noble human pursuit. But it is one that works best when pursued with humility.
I just came across this news piece
Those of us who live at the intersection of society and science know that one of the most serious problems impacting health around the globe is the increasing rates of obesity. Even in some developing countries the incidence of heart disease and type2 diabetes in increasing as a result of the expanding availability of Western-style calorie rich but nutrient poor food.
Why do we expect food to be cheap? Why do we desire cheap food? Sure I have read all the evolutionary just so stories about how we are hard-wired to eat. But those explanations tell us why we desire plentiful food. They do not explain why we want cheap food.
Cheap food – over processed and of dubious nutritional value is probably at the heart of much of the chronic disease with which we struggle. Could it be that people really don’t understand that you get what you pay for? Food should be expensive — it is what sustains us. It is nourishment. What I find most amazing is the folks who would never dream of drinking a can of some cheap soda, or a cheap bottle of beer, or a glass of jug wine are happy to line up for cheap food.
Please Olive Garden — don’t serve cheap food. If you must cut costs, provide less of good food. And with your advertising you can help educate a public that has forgotten how to value a basic requirement of life.
Well 2012 has come and gone. 2013 is old news. It has been a long time since I have had anything to say. Wait, that is not totally true. I rant at least once a day; sometimes more. I have alot to say. I think what has stopped me from posting is that I don’t feel like I have anything new to say. Nor are there any new problems. Biomedical science keeps promising more than it can deliver. Funders keep funding biomedical science because we humans have a cognitive module that wants to believe in mythologies. We love the myth of the lone genuis scientist working in the garage, blackballed by peers, until rescued by a $35000 grant due to the boldness, riskiness, thinking outside the boxness of charity X. We are afraid to question the “diseases are complex, yadda, yadda” so now let me tell you about my molecule likely to cure everthing from cancer to insomnia to male-pattern baldness. What mere mortal can question the wisdom of the biomedical scientist-genuis with 500 publications? There has to be the holy grail, the sword in the stone, the genie’s lamp — what if the magic bullet is right there, inches away, and we change course? Do funders dare to question the failures? No, because then the strategy is to repeat and repear until saying it enough times makes it true: failures are always the fault of too little funding.
The devastation and misery on the East Coast will cause many philanthropic organizations to consider doing something for disaster relief. This is only natural as the desire to deploy resources to alleviate human suffering in the driving motivation behind what we all do. Resist. Philanthropy is not charity. Palliative acts (e.g.feeding the hungry) are not the same as alleviating the root causes of problems. Rather than giving to charity – consider what the philanthropic approach might be. How can we better be prepared and respond to natural disasters. One question that comes up for me is the great enthusiasm I have seen for incentivising people to increasingly live in large urban centers (anti-suburban sprawl moevments are part of this, as are green transportation efforts, etc). I worry that we have not put enough thought into what happens to mega-cities when disaster strikes. There appears to be a special fragility to perturbations evidenced when large, densely populated “corridors” meet with natural or man-made disasters. Maybe sprawl in not the answer – but I think my preference for living is a small to medium sized town with transparent local governance. Now – funding research on this question and providing un-boased data for planners – now that might be a good investment for philantropy!
WHen talking about the work we do in philanthropy we often say we are investing in the acquisition of new knowledge and its responsible application. In other words, research and scholarship. But is knowledge acquistion and research necessarily the same thing? Unfortunately, in some disciplinary arenas research can become so derivative that it can be successfully argued that the findings are no longer contributing new knowledge. In other arenas the research directions have become so wacky and disconnected from any of the constraints of reality that it is also questionable as to the whether the findings constitute “knowledge.” There is also research where the findings may or may not represent new knowledge but the interpretation of the findings or the explanations attached to them represent anything but. I hope philanthropic investors are becoming increasingly savvy at parsing the distinctions made above. Too often the academic research enterprise is more about the packaging of products than it is about contributing to deep and real knowledge about the natural world.
This week brought the incredibly sad but not really unexpected news that the bapineuzumab trial, one of a series of drugs being tested in the search for long-hoped for breakthroughs in the treatment of AD, was being halted for lack of efficacy. http://www.msnbc.msn.com/id/48547963/ns/health-alzheimers_disease/
Why did I write “not really unexpected?” Because the results are not surprising in light of the failure of similar agents from similar trials. No one likes writing this — there is not a single individual I know in the neurosciences and in neurological disease research that would have wept at the news of a successful outcome. But, it is also time for the neurodegenerative disease community to burst our hypotheses about AD wide open and be willing to pursue heterodox ideas and alternative approaches. I have written this before and I know how difficult it is to write it.
But there has, from the very beginning, always been conflicts and contradictions within the Amyloid hypothesis. There has always been questions about the over-use of rodent models (particularly rodent models developed with circular reasoning) for what is quintessentially a human disease. It is painful to criticize the brilliant men and women who have spent decades dedicated to research. It is hard to fault the Pharmaceutical companies who have spent millions and millions of dollars on trials. It is heartbreaking to consider the patients and their families (and in truth, who among us has not been touched by this horrible disease?) when they read the disappointing news. In the end, however, I do believe science can win. But we can’t turn any ideas away. The philanthropic organizations dedicated to advancing AD research and treatements have an obligation to seek alternative approaches and create an environment receptive to boldness.
Regardless of whether you cheered or booed the recent Supreme Court decision on the Affordable Care Act – reading the opinions provides a valuable lesson in federalism and distributed decision making that Foundations would do well to review. I’ve written about this before -but sometimes it seems to me that non-profits have lost sense of why it is that they are tax exempt. In reality private foundations could simply turn all their assets over to the Federal Govt and let the Govt dole out grants for the arts, or for science, or for service organizations. So why do we have a tax code that encourages tax exemptions for gifts to charitable organizations? It derives in part from a tradition dating back to the founding of this country – that is that NOT all decision making should rest in the hands of a central government. Having a host of decision makers involved in charitable activities encourages diverse decision making and ensures a variety of approaches. Non-profits would do well to heed the characterization of non-profits “…as not business and not government.” We who work in this sector should ever be on guard to defend its independence through our actions.
It took all my strength to keep the top of my head from blowing off while having lunch with a senior academic scientist who also advises a few private funders supporting research in the neurosciences and neurological disease. What lit the fuse? Besides his treating me like I emerged from some dark cocoon only yesterday? It was that nothing said did not come straight from a decades old play book of the clichés, tired old lines, or semi-truths scientists have traditionally used when talking to donors. Language I assiduously worked to eliminate in a quest for more honest and authentic communication among researchers and reps from philanthropies. Sadly, funders still buy this stuff. My problem with this kind of dialogue, of course, is that I am a scientist. And I am a scientist that brings a scientific way of thinking into philanthropy. What does that mean? I question common wisdom assertions, I ask for data, I challenge the status quo, and I know what really goes on in the lab. Scientists talking to donors, particularly donors interested in diseases such as the topic at lunch, neurological disorders, tend to use a few well-trod pitches: 1) the need for collaboration, 2) the need for multi-disciplinary approaches, and the real point 3)the need for more money so that more of the same can be done. And it is always more of the same no matter how much “novel” lipstick is applied. To get something different you have to do something different. The reason we are not making progress against neurological diseases is not because there is not “enough.” It is not a question of quantity. It is not a simple problem of scale. The other problem is that “pitches” are always about the enterprise. Growing the field, the institution, the department, the lab. Pitches are always resource grabs – what is really desired is the opportunity for defenders of the status quo to control resources and direct it in ways that benefit a particular club. To be fair – they often truly believe that their club is pursuing the right line of research because it is comprised of the brightest, the elite, the prestigious, and the deserving. They are right. The difficulty is – the problem gets lost – the unique opportunity provided by small targeted investment gets lost – the ability to look at a problem in a harsh, critical, unsympathetic way gets lost. Philanthropic leaders interested in advancing science are NOT doing the scientific community any favors if they keep going back to the standard bearers in a field expecting new ideas. It is not possible to lead by following. It is not possible to lead without rolling up your sleeves and working hard. Leading means reading, questioning, thinking, exploring, and challenging. It means not getting to hang out with nobel laureates and the smartest guy in the room. It means risking that you will not be admired and liked for not rocking the boat. It means being scientific about science.
I find it almost mystifying that so many students are protesting business when the real target of their angst should be Academia – particuarly academic scientific research. Where else is there such blatant exploitation of the young by the old? Universities constantly raise tuition so that campuses can look more and more like 4 star resorts (see prior blogpost. Universities are all about creating your ‘experience’ (read future alumni donor) while the primary mission of providing a challenging education creating nuanced minds and deep thinkers becomes a sideline (or maybe a sideshow?). But even I have to admire the real cleverness with which they hoodwink students into believeing the real villain is the institution that loans you the funds to pay for the extravagant costs. The real outrage should be why listening to re-cycled lectures should cost $50 K per year – lectures delivered by professors very used to living in posh houses, dining at nice restuarants, and collecting wine. WHere is the outrage?? For the rest of us non-students — we should be equally outraged that our tax dollars are pouring into more and more buildings housing more and more research in a self-driven expansion of knowledge only a fraction of which is applicable to the very real and important problems facing humankind. Time to stop believing universities are “cool” – they are now pure business and no kinder and gentler than any other.
I am increasingly finding it disturbing that the FIRST key to operationalizing any idea is securing a grant. Any program a university wants to implement, from the mundane to the obvious, gains legs and cachet if it secures external funding. Even very wealthy private colleges with endowments dwarfing many private foundations will claim that unless a sponsor is found for the coffee and bagels that seminar series on (pick one of substitute your own topic) improving undergraduate education, or transfering educational skills to workplace skills, or how to better communicate your ideas to journalists is simply not going to happen. Similarly, despite the big bucks paid to build new research infrastructure with that all important “mingling space so needed to cross-fertilize new ideas across disciplinary silos” (or some other cliche about innovation) – don’t try to actually act on an interesting idea that emerges from that fortuitous bumping of heads unless you can identify an external source ready to fund it. The reality is – there is just not that much external funding available. In my neck of the woods – private foundation funding – grants are precisou and hard to come by. The funding rate at many private funders for scientific projects is probably around 5%. This makes the government funders like NIH and NSF look easy! What’s the solution – I am not sure. But it does seem to me that universities should be thinking about how they deploy their institutional resources to allow good ideas to seed. They may also need to re-evaluate their value system. AN idea should not be considered good because someone ELSE is willing to fund it. A strong internal compass and small amounts of discretionary funding might go along way. Now this may mean cutting back on the 5 star dorms, on campus sushi bars, and work out facilities that make a luxury resort envious. Never mind the university delegations to tour the gardens of Japan. Might be time to bring intellectual shabby chic back in style.