In the Saturday April 9 WSJ Mind & Matter column Susan Pinker painted a brave and honest portrait of her altered sense of self since she sustained a post-concussive mild brain injury 18 months ago. Pinker’s description of her protracted recovery adds another piece to the accumulated evidence that we understand very little about mind/body. Trauma can result in life-altering changes in how we see ourselves in the world. One moment we are fine and going busily about the day and then suddenly the world goes blank and we wake up in an utterly different place. There is pain, disorientation, loss of some capacities – and if we are lucky – a recovery process including various forms of rehabilitation to regain strength, mobility, and the many functions making up daily life. But what happens when one of the parts of us sustaining damage is also the organ of learning, decision-making, emotion, and self?
How do we tease out the survivorship effects of a serious accident – feeling precarious, vulnerable, fragile while at the same time pondering why it was that you were singled out — why did the accident happen at all? Now add the aftermath of the brain injury itself: fatique, foggy-thinking, memory loss, attentional difficulties and other symptoms.
Neuroscience can describe the concussive damage in terms of white matter shearing, or edema, or other structural issues depending on the temporal-spatial scale used to make meadurements – but it can not yet truly explain how it is that those structural injuries manifest in the lingering alterations of our cognition and our behavior – nor can neuroscience fully explain how changes in cognition and behavior then alter neurological function.
Congratulations are due to Mr. Zuckerberg and Dr. Chan on the birth of their child and the launch of their alternative model for philanthropic investment, but I am less willing than Professor Lenkowsky to completely throw the rich history, diversity, and success of American philanthropic traditions under the bus . Only time will tell if the Zuckerberg-Chan approach is â€œending philanthropy as we know it.â€ Like all social systems, strategic philanthropy should be challenged, questioned and perturbed less it grow to complacent in its responsibility to serve as a source of venture capital for public good. The more experiments we are able to run, the more models we can test, and the Congratulations are due to Mr. Zuckerberg and Dr. Chan on the birth of their child and the launch of their alternative model for philanthropic investment, but I am less willing than Professor Lenkowsky to completely throw the rich history, diversity, and success of American philanthropic traditions under the bus http://www.wsj.com/articles/ending-philanthropy-as-we-know-it-1449100975 . Only time will tell if the Zuckerberg-Chan approach is â€œending philanthropy as we know it.â€ Like all social systems, strategic philanthropy should be challenged, questioned and perturbed less it grow to complacent in its responsibility to serve as a source of venture capital for public good. The more experiments we are able to run, the more models we can test, and the more innovation that is trialed the better the â€œindependent sectorâ€ is likely to achieve its goals. Philanthropy should remain a vibrant labratory with room for experiments continually evaluating how best to use individual generosity and decision-making to solve important problems. Still, however exciting experiments appear, success requires more than assertions. Succesful outcomes can only be determined on the basis of data, analysis, and results. more innovation that is trialed the better the â€œindependent sectorâ€ is likely to achieve its goals. Philanthropy should remain a vibrant labratory with room for experiments continually evaluating how best to use individual generosity and decision-making to solve important problems. Still, however exciting experiments appear, success requires more than assertions. Succesful outcomes can only be determined on the basis of data, analysis, and results.
A new trend in scientists communicating with “the public” is to take information we scientists have known for decades and declare it some new found path-breaking insight. Along with this shameless repackaging comes the breathless quote “who knew that_____?” The blank is then filled with, what should be embarrassing, banality. Genetics is complicated; cancer is a heterogeneous disease; peanuts, fat, eggs, and so on are not that bad for you. My new favorite is the way neuroscientists have discovered the brains white matter as though it was some uncharted continent. Who knew white matter matters? We all knew. Everyone in neuroscience has always known. Studies on the importance of white matter and the non-neuron cells in the Nervous System, (Astrocytes, Oligodendrocytes, microglia, and so on) have occupied prominent neuroscientists for decades. We have also known that white matter is critical for normal brain function and that white matter disorders underlie a number of devastating neurological diseases for a very long time.
SO what is it that drives scientists to make these claims about the importance of white matter as though it collectively came to us in a dream last week? I do not know. But I think it is part of what is undermining the credibility of science. It is impossible to describe a wondrous new discovery in a news story that then refers back to work done in the 60s and 70s.
Disease advocates and funders should push back on this disingenuous manipulation whereby scientists mislead the public into thinking that progress is being made by re-branding yesterday’s findings as today’s big breakthrough. I do not care what is motivating this behavior. It is simply wrong.
It is wonderful that the ALS foundation has seen a huge financial windfall from its creative ice bucket challenge fundraising stunt. All terminal disease is terrible but ALS is a truly horrible disease. And there is, at the moment, little hope for effective therapies. But the ice bucket challenge has, for the moment, changed the focus of the questioning from – how to raise more funds? to what to do with the funds? And as difficult as fundraising is – using privately raised funds to spur new research for terrible diseases is, in my view, one of the most difficult challenges one can imagine. There will be no shortage of experts ready and willing to tell the charities where to put their funds.
Much of it will boil down to funding more of what is already being done.
ALS has always struck me as one of those diseases where we might have got ourselves into a local minima with respect to ideas. it seems like we are missing something – that to step back and really look with fresh ideas at the human disease, unbound from all our preconceived notions and scientific biases is needed. I know this seems wasteful to many in the scientific community who feel that we’ve got the right nail – what is needed is a bigger hammer.
Maybe. But I think this is where the private dollars could really make a difference. But it has to be an authentic conversation. And some of the voices really have to be new. And there has to be nothing too sacred to at least be considered for throwing under the bus. The ALS folks have shown they are willing to be really gutsy when it comes to raising funds. Now let us hope they will be equally gutsy when it comes time to spend.
The news coming from an international conference on Alzheimer’s Disease ongoing in Copenhagen indicates that the research focus is pivoting towards the push for early diagnostics. Â Â A number of stories have come out about non-invasive eye exams and a possible blood test that could indicate problems long before a person begins to show serious cognitive decline. Â Several studies are gearing up to look at preventative measures or ways to slow the progression of the disease (seeÂ http://online.wsj.com/articles/alzheimers-disease-fight-focuses-on-preventive-treatment-1405396803)
Remarkably – some of the positive preventative measures are our old standbys – diet and exercise. Â Some others are likewise treatments designed to help maintain overall health (controlling hypertension, cholesterol, and diabetes). Â Â But one can not help but wonder — is that about a particular disease with a very particular pathology – or is this more about staving off the Â cognitive decline of aging and ill-health?
Don’t get me wrong – I am all for studies that will help us age better, remain active, and delay and/or prevent cognitive decline.
But I think while this kind of effort is pursued the advocates and funders Â can not let science and medicine be diverted from the effort to treat a serious disease process that is devastating to individuals, families, and society.
I have written about this issue several times — there are these 3 factors that tend to creep in and divert us from hard and real problems:
- the Lure of Beauty – this is what we love about studying Â aspects of disease in place of disease. Â Â We pull on one single thread – ignoring the completeness of the fabric. Â Â We can do elegant, controlled, replicable, publishable science.
- Models of disease rather than disease – similar in some ways to 1. Â We create cartoons of disease and then make them the focus of all of the effort – forgetting somewhere along the way that models are often simplistic, artificial, and NOT the disease.
- Shifting focus from truly ill to worried well. Â Pre-cancer, pre-diabetes, pre-alzheimers. Â Of course prevention is always better than trying to cure endstage disease. Â Â But still, there is an obligation to try to relieve the suffering of people who have devastating illnesses.
Advocates should keep the pressure on.
Spring is here and I have been trying to channel theÂ new energy of the longer days, warmer air, and bursting life.Â Â Still, I can help feeling some nagging curmudgeonly negativity whenever someone sends me a link to a Ted talk.Â Â I think these glib, over practiced, designed to wow talks do very little to transmit knowledge.Â Â Â Under the guise of transmitting information the talks are really intended to transmit the “coolness” of science – and of course make rock-starsÂ out ofÂ geeks.Â Â Only kidding about that last part — I have never bought into the stereotype that scientists are geeks completely lacking in communicative ability.Â Â I have friends and colleagues who are remarkably good communicators.Â Â Of course I know lots of scientists who are NOT good communicators but I think this fact is also reflective of any population of individuals who work in specialized areas where a jargon develops.
But TED talks turn me off — they have become so stylized and lacking in any true human authenticity as to almost seem like parodies of themselves.Â Â Â But the really serious reason I dislikeÂ them is becauseÂ the TED style is beginning to permeate throughout ALL scientific communication.Â Â Â Every talk, even if just to your labÂ group or your department,Â has to be a slam-wham –Â banishedÂ are the pesky details (likeÂ methods) or the way data is analyzed – heck, gone is the data!Â Â Â Let’s just getÂ perform a masterly summary of the bottom line of my interpretations, why the results are so incredibly cool, why the whole world needs to act on what I have done – Â let the hype flow unchecked.Â Â Â Â It is unfortunate that a good idea can so quickly become corrupted because our need to entertain is so much more powerful than merely sharing what in many cases is the mundane, daily effort of seriously trying to understand something.
The philanthropy silly season is upon us. Â You know what I mean — the endless annual appeals, the bell ringers, the add a dollar to your grocery bill, the buy a paper candy cane to show your support for X, Y and Z. Â Each year, deciding how to give charitably becomes more difficult. Â How do you decide among the ongoing needs (feeding the hungry) with the immediate needs of the victims of catastrophes – be they natural or man-made. Â Â Last year it was the devastation of SuperStorm Sandy. Â This year it is the typhoons and the tornadoes. Â Our tendency is, of course, to give a dollar here, a dollar there, a donation here, a check there, a text for $10 dollars here, until we realize that while these small donations can add up — it is hard to see how this kind of giving helps in the long-term to strengthen our likelihood of withstanding devastating events. Â Are we helping institutions, organizations, and people begin to think about how we cope with adversity regardless of its source? Â Â Â JD Rockefeller – a pioneer of strategic giving Â invested in understanding the root causes (so not just feeding the hungry but understanding why there is hunger and how to eradicate it). Â Â So perhaps we need to think about how we support the organizations that do more than respond to tragic events but work to alleviate tragic events. Â Of course Rockefeller also wrote that organized strategic philanthropic giving did not absolve one of personal charitable giving. Â We still must respond to the crises. Â But we should also dig deep into our pockets and invest in solutions.
I wonder if all of our institutions are becoming not just too big to fail but too big to function? Â Â Universities can’t just provide an education – they have to provide “an experience.” Â The library can’t just loan books – it has to offer a carnival of entertainment. Â Â The zoo can’t just showcase interesting animals – it has to offer a hotel and a convention center. Â The radio-talk show has to have a blog, and sponsor events, a music play list, and … who knows, probably do your kids birthday party. Â Nothing can be a small itself. Â Â Everything has to be blown up like a giant hot-air balloon. Well, hot air balloons take a lot of energy. Â Â To paraphrase a fantastic saying I just heard from a very wise man — if you actually don’t want to do anything, do everything badly.
I suppose there has always been a bit of a grey about the way the academic science community talks to “the public” – broadly defined as everyone who does not have a tenured position in a scientific department or a full-time position at a research institute. Â Â Recently I have the feeling that the greyness is fading to something a bit beyond the pale. Â Â I have been reading that scientists want to flee the US because of the sequester (based on self report in a survey) with little or no hard evidence supplied. Â Â (ANOTHER TOPIC NOT TO BE DISCUSSED HERE IS THAT WE ARE MISSING CURES FOR DISEASE BECAUSE OF THE SEQUESTER AND LOSING A GENERATION OF SCIENTISTS — NOT EVIDENCED BY MY OWN EXPERIENCE OR THE NUMBER OF POSTDOCS I SEE IN BIOMEDICAL RESEARCH LABS) Â Scientists have often moved across national borders for any number of reasons. Â Â And besides, who cares? Â If a US trained scientist wants to go work in a research laboratory in Singapore or in China — isn’t this a good thing? Â Â Knowledge is not a zero-sum nationalistic game. Â Knowledge flows fairly easily across borders. Â All I want to know is – are they resigning from their US position or double dipping? Â Â Hopefully resigning so they are freeing up positions for others. Â I think we can all name US scientists who have accepted positions in international centers in addition to their US positions. Â I am reading that young academic scientists can not secure good jobs because old academic scientists can’t retire because of financial hardships. Â Â Seriously? Â Spend some time with an aging academic at prestigious scientific institutions like Yale, Harvard, MIT, Princeton or one of the UC schools and tell me if you think they have it rough. Â Ask any senior scientist for their travel schedule for the year and think about how much more money there might be for research if everyone stayed home 1/2 the time. Â Â Look – I am not saying that highly educated and valuable scientists do not deserve to be well-compensated and to enjoy one of the wonderful benefits of an academic life – travel to meet and exchange ideas with colleagues in pleasant and stimulating settings. Â What I am saying is that an academic scientific life is a good life, a privileged life supported to a large degree by public funds. Â The public should be told the truth.
I heard the title quote while listening to the ESPN radioshow Mike & Mike a few mornings ago. Â Â The commentor, a coach, was speaking in the context of the “Johnny Football” story about the Heisman trophy winning quarterback from Texas A&M. Â Â But he was making a much larger point about the responsibility of adults (like coaches) to help young athletes develop lives of integrity. Â To me – it was perhaps the simplest statement I have every heard summarizing a deep philosophical approach to life. Â How much better would the current state of so many of the institutions around us, seemingly bogging down in corruption, if we all lived this way — matching our lives to our words.
In the philanthropy of science it would mean funding what you say you are funding. Â If you say you are looking to fund ideas early in their inception, fund ideas early in their inception. Â Â If you say you want to provide opportunities for young scholars to pursue alternative hypothesis, don’t fund the anointed heir of the status quo.
For those seeking funding it would mean not saying you are curing disease X when you are can barely define disease X. Â Â It would mean not saying “no one is doing (or funding) Y when there are actually lots of researchers studying Y with lots of grant dollars.
For universities it would mean that scholarship and knowledge generation and transmission are job 1 – not selling sushi and sweatshirts or providing an “experience.”
If each of us – no matter our role – tried really hard to make our words match our lives we might make progress against some really tough problems.