The value of science?

I was watching a Discovery Channel program this evening and listening to some guy pontificating about the need to bring science to the public, and even better, to school kids. I found myself nodding in agreement but at the same time felt a little unease. I was surprised at myself because I have always been an advocate for more science education for the general public. What did I find upsetting in what this guy was saying? I realized with a kind of small epiphany that my own interest in science is not in science per se, but rather in the human relationship with science. I think the two are different. I can completely get behind the notion of teaching anyone who will listen the value of applying scientific principles to everyday life, and in the process shedding some light on certain facets of the way things work. However, I'm not so sure about teaching science as an absolute methodology, or an absolute set of facts, that represent 'the way things are'. Science is useful or not depending on our relationship with it. Religion is the same way although Richard Dawkins would likely say religion is never useful. Science is one way to look at the world that has offered up incredible insights to the way our world works and the way we as humans interact with it. However, there is much that science cannot shine a light on. Yet. The science that is accepted as 'real' is that which is agreed upon by the majority, or by the key figures in a particular discipline. The science that is not accepted as real, ie quack science, is accepted by only a few and cannot as yet be properly explained by the scientific tools we have at our disposal. Rather than teach this as being bad science, it should be highlighted as an example of unrealistic expectations of science and an overzealous faith in the power of one particular way of looking at the world being unable to explain certain observations. I say, teach the public about science, but keep it in perspective. The answers science offers us are the best we can come up with at a given moment in time. We should develop expectations of science as a way to understand our place in the world in a temporary and context dependent fashion. To teach our kids to be open-minded and to think for themselves rather than jump from one dogmatic view to another, would be progress indeed.

Nicholas Carr is right-Google is making us stoopid (sic)

Google is making us stupid. Well, Carr actually asked the question rather than made the statement but I think I know what his opinion is from reading the article he wrote in the latest Atlantic Monthly (July/August 2008 issue, Is Google Making us Stupid?). As I read I was jumping up and down in agreement. It's just the right question. For thinking humans, the internet it too tempting and too easy. While writing an article on dementia this evening I suddenly thought of an old school friend who became a famous horse jumper and rushed to Google to see if she was involved in the Olympic team. This distraction lasted about 10 minutes and was fruitless in turning up my friend. I them turned back to the article for half a paragraph before wondering about the weather tomorrow because we have a cook-out with friends. A quick check on weather.com reassured me that the cook-out has a 60% chance of being dry but if any storms occur, they are likely to be severe. Oh, and right now, there is a tornado brewing in New York. Only two minutes for that one and back to the article. I read for half a paragraph more before deciding to write this blog.
Carr feels that the net is changing not just the way we search but the way we think. The inventors of Google seem to be banking on it, as are all the advertisers that tempt us in every scrap of free space on the Internet. The potential for distraction on any one web page is enormous, with information just one click away on how to buy, sell, learn, relax, see related information, dig into archives, check our IQ, our eyesight, our 'real age' etc, etc. It is endless.
Information is so readily available that it becomes an invaluable tool for advancing human intellect. Fact, figures, answers are available virtually instantly. So rapidly can one get answers that we can ask hundreds of questions a day. Great! Mmmm,not so fast. In the olden days, when you had to look up information in libraries, newspapers or even other people's heads, you were more choosy about what you might ask. Some questions were not worth the trouble. Nowadays any whim that takes our fancy can be searched in an instant. It takes minutes. The problem is, all those not so smart questions that I didn't really need to know the answers to take up a good portion of my day when I add them all together. This is the power of the net-to allow one to collect unprecedented volumes of 'answers' to often trivial questions, thus making us unquestionably more intellectual, but arguably less intelligent. By orders of magnitude in my opinion. OSHO, the Indian philosopher sees intellect and intelligence as opposites in balance. More of one leads to less of the other. If OSHO is correct the Google is making us stupid. I am not a Luddite, but I do believe that as with freedom, technological advancement comes with great responsibility. It can't be take as read that more is better when it comes to information, especially when it comes at the expense of time to think. Who has to stop the madness? We do, of course. Only you and I can decide not to click that interesting link on the most recent evidence for Big Foot and the bizarre news conference that went with it....the web calls, gotta go..

Olympic fever

No, not a new disease. But it might as well be. It is just as debilitating to be glued to the TV at every opportunity as being bed-bound with a sickness, but a lot more fun. I watched the opening ceremony last night and was truly amazing at the seemless integration of human innovation and technological mastery. The coordination of the performers was unbelievable, especially the multiple groups of 2008 artists who drummed, danced, and tai-chi-ed like syncytia across the floors, the props and through the air.
As the history of China unfolded in the performances I was reminded of the wisdom of the East. At a conference in Singapore a few years ago, a speaker asked the audience a question: Which of the following are the odd ones out: cow, grass chicken? The audience was divided, along geographical lines it seemed. The Westerner agreed the grass is odd man because it is not an animal. The Eastern folks were certain it was the chicken because the cow eat the grass, leaving the chicken out in the cold. Who was right? Well, both. If you think in categories as we tend to in the West, then the grass is odd. For Easterners who believe everything is connected, then the chicken loses. The fundamental disconnect between two diametrically opposed ways of thinking in this simple but profound example lies at the heart of current contentions around communications, medicine, science and computing. It is becoming more clear that the East is right--everything is connected, so what do we do about our heavy reliance on taxonomic thinking and uber-reductionism in the West? This is the big problem of our age and it is up to those who can see both sides to bridge the divide.
Like the Beijing opening ceremony, there will have to be choices such as not using technology just because we can (there were several elements of the performances that could have been easily driven by technology but where people were used instead). A hi-tech show would have been more flawless, but the real awe for me, was inspired by the trade off of precision for heart. Knowing the practice, the team work and the pride that went must have gone into those performances made them special in a way pure technology could not.

Eating to fit your heritage?

Just a quick blog on eating, after getting half way through Michael Pollan's book, In Defense of Food (2008, Penguin Press). One of Pollan's theses is that we have turned into a nation (world?) obsessed with nutrition to the detriment of our health. I believe what he says so far. His book provides a shining example of the problems of over-reliance on reductionism that I'm writing about in my own book. Pollan talks about the various diets of indigenous peoples and how, despite the variety in their staples, they all seem to maintain their health. When these folks are uprooted and placed in a different food habitat, or even worse, adopt the Western diet, they become fat, diabetic and acquire heart disease.
It seems there is an opportunity here. Scientific reductionism yielded the Human Genome Project which has had limited impact so far on the nation's health. If diet really is the main culprit for our decline in health and life expectancy (Pollan notes that in 2007, we were ranked by the CIA fact book as 45th for life expectancy behind Israel, Bermuda, Jordan and Bosnia) then how much can be blamed on the Western diet in general and how much on our removal from our native food habitats which we had evolved to thrive on? It would seem like a double whammy. Many of us do not know our exact heritage (I'm adopted and have no clue other than I was born in London) and therefore may not know how to choose food wisely for our genotype and phenotype. Maybe genomic profiling for heritage may help us understand what's good for us and what is not. So the key to regaining a healthy relationship with our food could be to find out where we were evolved and eat what that culture eats/ate. That and avoiding the Western diet (the odds are against us with the food industry's tactical and political clout, but it's worth a try). I wonder if there is any way my genes would show an evolutionary adaptation to eating potato chips....? Just a thought.

Knowledge versus information

I am somewhat of a temporalist (yes, spellchecker caught this invented word), meaning that I like to create timelines to see how thought has changed over the years on various subjects. In other words, I am interested in what is believed at a moment in time. I do believe in ‘truth’ but I’m not sure how to define it. On the other hand, something that is ‘true’ is easy to define; a so-called fact that is commonly understood to be true according to certain conventions mainly based on science. I say mainly, because there is often general agreement that something is so, even when there is no way to prove it. That a sunset is beautiful for example, is an observation that is unverifiable scientifically because there are no criteria against which to measure the assertion other than everybody thinks so. Few would deny the beauty inherent in a good sunset, and many would even agree that it’s a fact that sunsets are beautiful. But if we try to convey that ‘fact’ to others we quickly find that it is impossible to pass on the experience. You just had to be there.
Similar problems occur when sorting out the differences with information and knowledge. In my view, the difference between information and knowledge is mainly this:
Information occurs in discrete packets that can be transferred without loss of meaning by word, in image, or by numbers. It is slightly more sophisticated than data in that there is already some context applied in the way it is packaged (eg labeled and categorized). Information can be true or false, and we can still be informed when the information is false.
Knowledge is the sum of knowing and occurs after we have received information in one form or another (experiential, or objective) and have interpreted it based on our own experience as well as the context with which it came to us, and have added it to our store of accepted wisdom (even if it is only accepted wisdom in our own heads). When we know something we accept it as true.
An example: you can have information that eating too many cherries causes Alzheimer’s Disease or you can know eating too many cherries cause Alzheimer’s. In the former you can be informed but still suspend belief; in the latter you have made your choice to accept the information as true (with or without caveats).
When you look at it this way it becomes very easy to see why institutionalized knowledge management efforts often fail. Knowledge is accepted wisdom for a moment in time. Information exists forever. Knowledge cannot be easily transferred because it requires the receiver to believe the contexts and conditions that apply to the knowledge in question. Information is easily transferred because there is little judgment involved. It is what it is. One can argue about what category it goes in, or about whether it is true or not, but information is just information at the end of the day.
Knowledge management inside corporations has historically confused information and knowledge. Sophisticated IT systems have been set up for ‘knowledge transfer’ and extensive people networks built to ‘share knowledge’. Computing is well suited to sharing information, but not to sharing knowledge unless there is a way to de-contextualize the knowledge back to data and allow re-sorting in the light of new and different contexts. This can happen with ontologically based systems that allow complex questions to be asked of the de-contextualized knowledge such that new insights can be derived. Most knowledge management initiatives within large institutions end up buried in an IT group where some system is build to store and share ‘best practices’, or to access multiple databases from a single interface in the hope of improving accessibility to knowledge deep within the organization. By ignoring the human side of KM, (ie that knowledge includes a belief element and therefore an element of trust), these initiatives cause untold political horrors and at best produce yet another data access tool that skims the surface of real knowledge while continuing to build deep silos to hold yet more information.
People networks are often used to ‘transfer knowledge’ from person to person, group to group. These approaches have yielded some genuine successes but can stumble when there is a failure to realize that transferring knowledge requires transfer of belief that the knowledge is true, or at least a forum to challenge and evolve an understanding. An open acknowledgement of the assumptions that accompany knowledge as it is passed along can alleviate the pain and create a path to success. This is a relatively simple task and I’m not sure why it is not more often undertaken.
Knowledge management is considered an old fad nowadays. It’s a shame since this is a time when organizations that deal in novelty and innovation surely need it the most.

Umberto Eco likes Starksy and Hutch

Umberto Eco likes Starsky and Hutch. Imagine my surprise when I read that. Umberto is one of my favorite philosopher/novelists and I have to admit I was heartened to read that he like TV, DVDs and especially cheesy TV detectives. I was reading the latest Paris Review and the interview with Mr Eco is priceless. I found that he and I have much in common aside from the fact that he is Italian, unimaginably intelligent, and wildly successful as a novelist and scholar, and I am none of those things. We share a fascination with language, books, communication generally,magic, alchemy, The Middle Ages, and the intersections between all those things. He says he never stops working, always thinking about stories wherever he is (especially in water it seems--me too!). Umberto has something else I don't have-a prodigious memory. He actually remembers the books he reads and the thoughts he has on his travels and then incorporates them into his writings on a daily basis. I am in awe of a good memory and inspired by his approach to his work which seems less methodical than most writers I've read about.
There are snippets about Umberto's feeling on facts and culture. He recognizes that facts are contextual to some degree and while 'true' at a moment in time, are not necessarily 'truth'. He talks about culture as the determiner of what is remembered and what is forgotten, and in a sense he is talking about what we believe to be knowledge and how we preserve or alter it. One of the most profound acknowledgements made in the interview is that the literate person can afford himself multiple lives through reading whereas the illiterate person is stuck with only one--the real life.

You might be wondering what this has to do with future health trends and the honest answer is nothing at all. I just found this interview interesting and wanted to share! Check it out in The Paris Review, Summer 2008.

Can it be science without a hypothesis

Do we still need hypothesis? What is a hypothesis anyway? For that matter, what is science? Is collecting data and using IT tools to look for patterns still science? You use the results to FORM a hypothesis rather then INVENT a hypothesis first and then go test it with data. This is a critical question in our day and age. For a good example of the kind of question being asked i see Chris Anderson on The End of Theory in Wired Magazine: http://www.wired.com/science/discoveries/magazine/16-07/pb_theory

This is my take: data is just data. Just because it is encoded in some system doesn’t make it any more or less likely to inspire a hypothesis than, say, looking at a sunset through polluted skies. Inspiration comes from data of all kinds- visual data from the sunset, or complex numeric data from a bunch of codes on a screen. The bigger question might be: where does science begin? If we loot at the sunset, or the enormous, dry, data set, and then create a hypothesis about why the sun is red, or why protein X and protein Y co-occur, where does the science begin? With the looking, or the hypothesizing? Hard to say and maybe not that important except when you are looking for grant money perhaps. Just sifting through data to look for co-occurrences is not good enough. Don’t get me wrong-it’s good. Just not good enough. You need to follow up with a hypothesis to make it ‘science’. So to me, it seems like science still must still, therefore, start with a hypothesis.

Low-fat, low-carb-which is best?

The news is out. Low-carb is as good as low-fat for losing weight, and may be even better for your cholesterol. The Mediterranean diet is better for reducing fasting glucose according to the study that was published in the New England Journal of Medicine this week. In the same issue of the NEJM there is a book review on the latest thinking on Metabolic Syndrome, the collection of biomarkers that puts a person at high risk of diabetes and heart disease at the very least. Apparently about 60% of those over 60 years of age in the US suffer from Metabolic Syndrome (previously known as Syndrome X, and maybe now known as Dys-metabolic Syndrome) which manifests as abdominal obesity, high blood pressure, insulin resistance and an unfavorable cholesterol profile. The NEJM study showed the Mediterranean diet reduced fasting glucose, while the low-card diet yielded better weight loss and an improved cholesterol profile which made me think that either of these diet approaches could have far-reaching health benefits beyond weight loss if we took a closer look at what such diets do to Metabolic Syndrome as a whole.

The study took two years and participants appeared to remain compliant to the diets they were assigned. Weight loss was between 3 and 6kg for all groups with the least in the low-fat group and the most in the low-carb. The low-carb group, was the only group where calories were not restricted. Perhaps the low-carb diet curbs appetite in itself?

The article was interesting because it cobbled a sacred cow that says low fat diets reduce cholesterol. From this study it seems you are better off with low-carb to improve your cholesterol profile. The low-carb increased HDl and decreased LDL, whereas the low-fat diet had a negligible effect on LD although it did raise HDL.

The study has some flaws; it relies on self reporting for dietary compliance although relatives were instructed to encourage participants to stick to the plan. There were also few women in the study which is significant because the data did suggest some gender-based differences in effects of the three diets. Overall, I found the data interesting, and hope to see more of these longer term studies that study the effect of dietary composition on factors relating to weight and health. If 60% of us are truly suffering from Metabolic Syndrome, and hence will be looking for ways to slim down and de-fat our blood streams in the future, then the more of this type of study the better. Or maybe not. As Michael Pollan (author of In Defense of Food, 2008, The Penguin Press) might say, there should be little need to tell us what our bodies already know. We evolved to eat. Not too much, Mostly plants.

So why does it seem so hard?

Shai, I., et al., ., , . (2008). Weight loss with a low-carbohydrate, Mediterranean, or low-fat diet.. New England Journal of Medicine, 359(3), 229-241.

Tom Wolfe and Michael Gazzaniga

I love Seed magazine. One feature is the salon that puts scientists and humanists together to talk about life, the universe and everything (see my 'shared items' link for the link to the article). This month, Tom Wolfe and Michael Gazzaniga talk about status, language,free will, cognition, and a few other topics thrown in. The conversation is stimulating especially when the pair get to talking about the region of the left hemisphere that MG has identified as The Interpreter. This is the area that takes in everything that is happening and makes sense of it, probably through language. It reminded me of Eckardt Tolle's Ego in his book A New Earth. Is that what the Interpreter is? The Ego? I would love for MG and TW to comment on that.
Another thread related to the meaning of language is also interesting. The two debate the importance of language as a means to make sense of the world. I agree with TW's basic conclusion that language is a artifact rather than a natural evolution of intelligence. Language allows us to ask why, say TW, and that's about it. That question inevitably leads to the rest of humanity. I think this relates to the ontology/taxonomy argument as well. Ontology is the state of being (ie experiential) and taxonomy or classification gives us a way to describe it through language. Classification of things into boxes is our attempt to artificially evolve our experience into something that can be described and therefore communicated. The problem is that we wrap way too many assumptions about context into our classifications so we end up falling over our categories, our words and ourselves when we try to box things in to predetermined slots. TW also talks about our experiences as humans always being contextualized by status, or lack of it. We cannot help but compare ourselves to the person in front of us. He talks of our affinity for fiction as being an extension of our obsession with status, and again I agree with him.
The final topic for the conversation was free will. The current debate about our dualistic minds and who really is responsible for our actions--our brain which makes us do stuff, or our true selves which actually commits the act. Apparently there are legal arguments abounding that try to allow people to say, my brain did it, not me. This, to me, is ridiculous. While I agree with Tolle and MG that dualism drives human behavior, there is no way to my mind that an individual should not be held accountable for his actions (except for the usual slippery slopes of mental illness that are often rightfully brought to bear in a court of law). Although we don't understand it yet, "we" are "brain mechanics+consciousness", and no matter how you look at it, that combo is all there is. Unless....well, maybe another blog..

Lewy Body Dementia

I just finished reading Dr Tom Graboys memoir describing his descent into dementia and Parkinson's disease. I give the writing 3 stars, the tremendous effort it must have take to organize and write the book a 4th star, and a big fifth star for the moving poem at the very end that was written by his dying first wife a few years ago. It's a quick read but well worth it.
I was amazed at how many symptoms Dr Graboys experienced that were also part of my dad's disease. My dad suffered from Lewy Body Disease and died in 2004 of an overdose of an anti-psychotic drug-Olanzapine (Zypreza)-after he contracted Neuroleptic Malignant Syndrome, an uncommon but not improbable outcome of overdose with this class of drugs. Dr Grayboys talks about his struggles with driving and with writing. My father clung to his right to drive for as long as he could, even driving my mother to the coast 60 miles from their home just months before he was hospitalized for the last time. When they got to the boarding house that night, he could not figure out how to get the car into the driveway so the hotel owner had to park the car for him as he stood by my mother's side and watched. Looking back, we realize what a tremendous feat of concentration it must have been to drive for 2 hours after dark to take my mum on that last trip. She spoke to me during the holiday, full of dread for the journey home. He made it admirably, going no faster than 30 miles an hour at any time. My dad always loved to drive and once his disease had really taken hold it was one of the few expressions of his utility to the family that he should continue to taxi folks here and there. Later, when he was in the nursing home my mum sold the car (she didn't drive) but we could never tell him it was gone. It would have broken his heart, at least what was left of it.
Dr Grayboys talks about his disease as being primarily Parkinson's Disease with some Lewy Body Dementia. In my father's case, the doctor had suggested he had full blown Lewy Body Disease and that the difficulties with gross motor skills were Parkinson-like rather than actual Parkinson's. After a review of the literature on Lewy Body it seems as though the symptoms define the disease and having Parkinson-like symptoms along with dementia means one has Lewy Body Dementia. Dr Graboys described his stooped appearance and I remember looking at my dad at one point and thinking he was physically reverting almost to the stage of fetal development where the fetus looks looks like a stumpy seahorse. His neck was thickened and stiff so he could not properly look up which emphasized the curvature and his stoop even more. It also gave him an appearance of extreme humility, which was fitting, because my father had always been one of the most humble human beings I have ever known. Dr Graboys seems more aware of his disease than may father was although the extent of denial was similar in each. Every symptom was entertained with an elaborate theory until finally in Dr Graboy's case, he had to give up practicing medicine, and in my father's case, the men in white coats came to take him away.
Lewy Body Dementia is not well-understood and according to the Lewy Body Society, under-diagnosed. 1 in 199 people are afflicted in their later year which adds up to about 150 million people across the States. There is no cure, yet, but Dr Graboys does mention a drug regimen that seems to be helping him- a combination of Aricept and Namenda, both indicated for dementia but usually with little long-term benefit. My father was considered past all help in that department and spent his last two years being calmed with the Zyprexa that eventually killed him. The Lewy Body Dementia Organization has an excellent website at www.lbda.org. The latest issue of their newsletter has an article on Dr Graboys and a touching picture of him in his local coffee shop which he still drives to everyday. There is also an article on one of the most fascinating symptoms of the disease (although it is not a definitive sign)--REM Sleep Behavior Disorder (RBD), where sleepers act out their dreams. For my dad this started many years before any other symptom and was a source of continual pain in my parents relationship. My mum couldn't help but take it personally when he would lash out is his sleep almost every night, and took to sleeping in a different bed once the flailing began. My dad remembered nothing of these episode of course.
To me, the disease is fascinating, terrifying and deeply sad. I look forward to researching more about the underlying pathophysiology and reporting back on what I find to this blog.

Scanning the mind--a quacker or not?

Another one from Wired.com that fits the sorcery or science mold (Brain Scans as Mid Readers? Don't Believe the Hype, Wired, May 19, 2008). The article deals with brain scanning using functional and structural tools to determine how 'healthy' the brain is. The writer believes it is sorcery, the doctor he reported on believes it is science. I think it is classic Edge science where both sorcery and science are involved. The scans show particular features of an individual's brains, but the reported argues that this is meaningless without the solid hypothesis generation and testing that is a hallmark of 'real' science. The comments to the article are also interesting in that you get hearty agreement from some that the guys is a quack, while others defend the good doctor with a much vigor. Science at the edge involves observation and tolerance of soft measures. Many are uncomfortable with this, and with good reason. But, it has to be done this way if new advances are to be had.
My take: the images give a doctor data that he can use along with regular clinical data to better form his opinion about what may be troubling the patient. It think the approach is probably more useful to understand brain irregularities when a patient has symptoms rather than just assessing overall brain health. The doctor's recommendation to take Gingko to improve activity in the brain is dubious and doesn't add to his credibility in my opinion. Edge science is by definition unproven. Benefits are often seen before they can be explained or clearly predicted. In fact, that is true of even pharmaceuticals if one takes the data on a person-to-person level. I'm reluctant to endorse these tools for marketing purposes but already we see them employed to this end. I don't know why i don't like it; it just feels a bit too predatory I guess.
I think we must remain open to the possibilities highlighted in Dr Amen's work for brain assessment as it accompanies more traditional psychological and psychiatric methods. The reporter is judging the work and his own 'diagnosis' by Amen based on reductionist values and he can't be blamed for that. Science has relied on these values since the Renaissance. We are now moving towards less reductionist approaches to science and medicine (we know too much to settle for pure reductionism in this day and age) and, provided we stay grounded in our objective of genuine enquiry, I think brain scanning in all its guises must be observed, debated, and eventually included (or not) as an important tool in the diagnosis and treatment of psychiatric brain dysfunction. It's role in marketing, however, requires some ethical debate. The article asks the right kinds of questions; the comments back show the polarized thinking that usually occurs at the Edges.
See: Wired Magazine 16.06 on 19th May 2008

Gene testing under threat in California

Oh boy. Some interesting news today on wired.com about the recent cease-and-desist letters sent to 13 genetic testing companies in the state of California. The letters can be found at wired.com and basically state the the companies, which include 23andme, and Navigenics, are breaching 7 statutes regarding patient testing and lab certification by procuring clients directly rather than through prescription. What is at issue here is the role of physicians in genetic testing, and much rests on whether genetic tests results are considered merely information for the consumer, or more significantly, diagnostic for the patient.

I recently had a conversation with someone who had taken a genetic test and is now in possession of her genetic profile and its associated risks. She assumed the risks were definitive and that we would progress to certain diseases states if she id not take action. So, she began taking the potions sold by the gene testing company in order to protect herself from what would otherwise be genetic certainties. There are a few things wrong with this picture. Firstly, the tests are not usually definitive. As I said in a previous blog, diseases are the result of complex interactions between genes, physiology and environment. There is simply not enough research to pin a particular disease on most genetic variants...yet. It may come one day but for now we have indications of potential risk and that is all. There are certain genes that do confer serious and significant risk; the Huntington's Disease gene tests are predictive for example and testing should, and is, approached with caution (see previous blog). Secondly, most individuals are not sufficiently knowledgeable about genes and their effects to know how to interpret the genetic 'information' they get back from gene testing. The lady I spoke to believed they were definitive, but also believed the vitamin concoctions she had purchased would prevent bad things. Again, there are signs that supplements may be helpful in preventing some diseases, but most claims are not backed up by rigorous study. Gene tests can seem self-serving when they are packaged with convenient supplements to assuage the fear wrought by the tests in the first place.

The action of the health department in California is intended to protect the public as far as I can see. The situation seems complex but I think it is simple at one level. Personalized medicine is touted as the next big thing by the media and the companies who provide the tools. The benefits are obvious; targeting the right medicines to the right people to reduce side effects and improve effectiveness. The public wants personalized medicine and sees genetic testing as a first step to take control over their 'personal health'. It is natural and to be expected that someone will want to make a business out of it. It is also natural that the doctors feel they have lost control over an important health parameter especially since the data requires objective interpretation to be useful. My vote would be to keep gene testing as an option for folks who want it, ensure it is ordered through physicians, require ordering physicians to maintain a state-of-the-art understanding of the implications of gene testing and the risks it can potentially identify to the patient so that they can counsel the patient on findings, and, ideally, ensure all gene-tested subjects are entered into an anonymized database that also tracks their disease development should it occur. This way, the knowledge base on genetic risk grows and informs future interpretations.
In the Wired.com article the CEO of Navigenics says she hopes the health department officials understand the difference between a genetic risk and a diagnostic. As I see it, the real question is, do the patients?

Huntington's disease--a case of genetic determinism

After yesterday's blog I said that most genes are not deterministic and the some genes confer some risk of some disease either alone or in combination with other genes. The Huntington's Disease gene is different. Inherit this one and the disease is yours. For a truly gripping account of one man's decision to test or not test, check out the June 16th New York Magazine, Mind Bomb by Kevin Baker. Kevin's mother has the disease and he has watched her decline over the past 13 years. Is he witnessing his future? You have to read the article to find out but regardless of his fate, the very act of taking the test is fraught with caution, process and bravery. This test is not one that is undertaken lightly. As one nurse put it, once you know, you cannot not know.
Read the article. It's an enlightening tale of what all of our futures could be like as we learn more about what our own genes mean for our future health.

Health advances-not so fast

A section of New York Magazine, June 16th 2008, begins with the words, ‘medicine advances at astonishing speeds’. It’s a profound statement but is it accurate? Of course it depends on what you mean by astonishing speed, but I think medicine progresses quite slowly considering the rate at which we accumulate new insights into disease and it’s potential treatments. We hypothesis and test at an alarming rate, but it can take an interminably long time for a new medicine to reach the pharmacy, or for a medical paradigm to shift. Take the Human Genome Project for example. This was a 13-year old project coordinated by the National Institutes of Health and the US dept of energy. Multiple countries participated as did the Wellcome Trust, a premier UK research foundation. Much was made of the effort which identified most of the 12-25,000 genes estimated to make up the human genome, and determined the sequence of the 3 billion chemical base bases that make up human DNA. (ref: www.ornl.gov/sci/techresources/Human_Genome/home.shtml). As it neared completion, widespread anticipation grew among the general public about the slew of medicines that would surely follow the last gene identified. We are now 5 years on and there is little to show for it in terms of medical breakthroughs. The NIH itself admits that the analyses of the data will continue for many years. The most obvious outcome to date is the availability of a relatively cheap way to get a genetic profile for those that are brave enough. Even this though, is not a definitive depiction of the future for those that take the test. Genes are rarely deterministic, depending on environmental conditions to trigger and support their directives to vulnerable cells and systems. Some companies that administer the tests also supply the putative nutritional safeguards that go along with each potential risk, playing on the fears of the patient and pocketing the rewards as a result. Not that genetic testing is bad; rather that it needs to be kept in perspective. Knowing your genetic risk can be a good thing if the risk is well characterized and there are things you can do to off-set the disease. For most genetic risks, that is not the case. Human physiology in health and disease is fascinating and complicated and inherently unique. Understanding the interactions of genes with each other and the environment in which they operate requires lengthy research and analysis. We should learn to set our expectations. Accumulation of observations is indeed fabulously fast. But translation to, and acceptance of, real benefit will always be, by comparison, painstakingly slow.

Living with our genes

Gene testing is becoming more popular and I expect it will become downright trendy now that Bush has signed a bill to prevent discrimination against folks with dodgy genes. When I say dodgy, I mean potentially dodgy of course. Not all genetic portents truly predict an undesirable future. The environment must also play its part. In talking to a friend from the UK last week, the topic came up around gene testing and the dilemma of insurers and employers who may see a risk the the genetic profile of prospective customers or workers but have limited ways to use that information to politely tell a prospect, no. It sounds unethical to deny insurance coverage or employment, but is it?
Our discussions was colored by the healthcare environment my friend and I are from. I live in the US, he in the UK. He has access to socialized medicine. I do not. I rely on reimbursement for all procedures and medicines from my insurance company. He never sees a medical bill. Both our worlds are governed by codes and formularies. In mine, how my doctors visit is categorized governs how much I will have to pay for services.
He put forward a view that if insurance companies take into account all risk factors including genetic ones, then the greater good will be served by providing less coverage for more risky cases. The genetic profile just helps to fill out the picture and the resulting gaps in coverage then provide an opportunity for novel approaches to insurance to entrepreneurs. In other words, the free market prevails. He has an excellent point and he comes from a country that has a basically fair health system, despite all its shortcomings. It is natural for him to think there is a fair way to deal with genetic profiles without having to resort to policies to protect those with ‘bad genes’. For me, living in the US, it seems as though gene testing provides one more level of categorization that will lead to no reimbursement or unaffordable coverage for many. The codes for risky genes have yet to be inserted to a system that leaves millions of Americans uninsured. Anit-discrimination laws do not endorse irresponsible behavior in the light of risky genes but rather give pause to those who seek to capitalize on the information for financial gain. The laws make us think. For genetic variance, our state of understanding is very immature. Genes and environment interact to place us at risk of disease in ways that are unique to each individual. It will be very difficult to say just what health outcome can be expected of a particular gene profile for many years into the future to come. In the meantime, the anti-discrimination laws will hold overzealous insurers and employers at bay. The ‘defective gene’ label is one that we can ill afford until more is understood about what it means. And boxing us into yet another categorization with a damning code to decide how we pay, is just a little before its time.

To validate or not to validate?

I'm reading some Eckhart Tolle and loving it. It hit me today that there are three basic modes of living. First there is the ego driven life that requiree validation constantly. I used to think that validation was important for happiness and success. I though that some individuals were destined to continually seek for acceptance to fill the void created in their early years from not being vaildated by parents and caregivers. I felt validation of core identity was the key. I now think differently. Validation is still important, especially in the first half of life. We want to be seen to be successful, pretty, competent, 'identified'. After reading Tolle I realize that it is just the ego that needs the validation and will indeed continually seek it. Marketers love the ego. Fashion, smelly candles, clubs, holidays, shoes (my ego loves shoes), houses, all validate the ego and create a sense of belonging through ownership or involvement. Without the ego and its constant need for satisafaction, capitalism would struggle to survive.

The second mode of living is the conscious mode that Tolle talks about. It is akin to 'second level' stages of the Spiral. This mode develops through the second half of life (I am speaking in generalities since all lives evolve at their own pace and some people seem born into conscious existance, while others live through their ego to the bitter end). As the first mode declines, and the ego becomes more observed and therefor emore under control then conscious living takes over. It seems the two oscillate with ego winning at first, and consciousness taking over for the latter half. Perhaps the time the balance shifts from ego to consciousness is what we view as the 'mid-life crisis'. If so, I hope one day we will learn to welcome the crisis, working through and then above it, through to enlightenment. I'd recommend Tolle's books. To me they represent a fundamental truth that I have always known but not always understood.

The third mode of life is familiar to many in the US, and paid my salary for many years. It is the medicated life. This is the life that disturbs me the most, I have nothing against medications for the most part; just last week my mother's life was saved by a high dose intravneous diuretic that was in essence, a miracle cure for the acute condition she found herself in. However, we turn too readily to drugs to calm and soothe, energize and stimulate. We expect to find solace and health in a pill. If enough of us continue to live this way, our culture will hit a very real hurdle in its evolution. However, I do sense a scepticism about medicines that could lead to a more healthy application of them. Hopefully, over time we can become more conscious in the way we diagnose and treat illness, making use of all available therapies from across the traditional and complementary spectrum. I think Tolle has a unique way of expressing the duality that causes us so many problems as we wrestle a demon we often do not even know exists. I wonder if it is most usefully applied to this third mode of life where have become so disconnected from our own healing mechanisms.

Alzheimer's Disease-from bad to worse

I read today that drugs commonly used to treat some Alzheimer's Disease (AD) patients do not do any good, and may even do some harm. The BBC reported on their website that the neuroleptic drugs that are sometimes given to AD patients to control behavior, can also compromise verbal skills in patients with only mild cognitive impairment. These drugs were originally developed to treat psychosis in schizophrenic patients but are often given to elderly patients with dementia because they can control the aggression that comes with the progression of AD. This latter indication is an off-label indication since the FDA has not approved it for such use, nor has it been tested widely in the elderly. Olanzapine (trade name, Zyprexa) made by Lilly) has come under particular fire lately for inappropriate advertising and administration for off-label indications.

In 2004 the Committee on the Safety of Medicines in the UK issued a warning that Zyprexa could cause strokes in patients with dementia and recommended it not be used for that purpose. In 2004 my father died from the effects of Zyprexa while under the care of a nursing home in my home town of Newark, UK.
My father had been deteriorating from the effects of Lewy Body Disease (a type of dementia that has features of AD as well as Parkinson's like shuffling) and was taking Zyprexa daily to control aggression. I remember the day the hospital doctor told me it was his only hope. He would sit on the floor and refuse to get up, strike out occasionally and wander in the streets at night. It was explained to me that Zyprexa was his last chance to retain some some semblance of manageability as his dementia continued to progress. That same doctor told me that he 'was not in there' when he went through a phase of not talking, but of course, his family knew differently. He was there all along, but he just couldn't always show us. After he had been in the nursing home for a couple of years, the doctor decided to increase his dose of Zyprexa. He was too lively it seemed. Not for long. The day nurse increased his dose. The night nurse increased his dose. The result was a fatal overdose. The day he got the double dose, he immediately spike a fever. My mum relayed to me that his face was very flushed and he was silent. He seemed to be in pain and his urine was very dark. He had taken to his bed and could not get up. The research I was doing at the time while at Pfizer led me to the web where my suspicions were confirmed. He was suffering a rare (but is it that rare?) side effect of some anti-psychotic medications, Neuroleptic Malignant Syndrome. The high temperature brought on my the drug caused his muscle tissue to break down giving rise to the tell-tale dark brown urine color of rhabdomyolysis or muscle toxicity. He never got out of bed again and 4 months later, passed away. His medicine records were never found and my mum would not consent to a postmortem so it looked as though he just slipped away from advanced dementia. There are so many things wrong with the picture I just painted but I want to raise one that has nothing to do with the use of anti-psychotics in the elderly and everything to do with how we view dementia in the first place. A new book I am reading called The Myth of Alzheimer's questions our categorization of the disease and suggests that we over-focus on the disease labels and unnecessary treatments, and under focus on the social aspect of caring for our elderly as they progress through old age and is challenges. In his book, Dr Peter Whitehouse suggests that AD is little more than a convenient marketing empire that distracts us from the core issues with the disease which are, that we do not know what causes it, or whether it merely represents a 'normal' aging of the brain that occurs at different times in different people (a bit like some people get aching bones earlier than others perhaps...).
The book makes me wonder about my own experience with a loved one with dementia. The drugs, the quick proclamation that 'he's not in there any more' when he clearly was very much 'in there', and the fear and denial associated with his daily delusions (he was usually happy with his hallucinations, it was us that were not). Perhaps we need to learn to be more gracious with the demented. Perhaps our social systems should be more geared towards support of the elderly rather than condemnation to a disease state that strikes fear into the hearts of all of us. My dad had a good life and retained his character until the end but in a changed form. His 'disease' created another version of himself that was as fascinating as it was sad. He didn't lose himself as much as found a new self. If we had been able to grasp that at the time, we may have been better company for him in his last years.

(Hyper?) Active kids

Children are a delight and a worry. The only time I am completely happy is when they are asleep in bed. And even then I wonder whether the blankets are occluding their breathing and the CO2 giving them brain damage. When my youngest was a baby, I was convinced he was growing asymmetrically. It didn't help that our pediatrician was new to the job and tended to validate all my concerns before referring him to other more experienced doctors who reassured me that he was quite normal every time.

Now they are older (soon-to-be 15, and 12) and they worry me no less. The older one for obvious reasons, but both of them because this is the time in their life when they are developing a sense for what they might want to be when they grow up. It was with great surprise then, when my 12 year old asked me to talk to his teachers about him intending to be a musician when he grows up, and asking for their help in getting his grades up so he could get to college. The music bit was not a surprise-the boy creates new songs every day- but the link to good grades and college was.

I did meet with his teachers to talk about his academic progress (or lack of it in some areas) after his home room teacher suggested I needed to come in. I was nervous, because earlier in the year, the school counselor had called and asked if they could assess my son for attention problems. I said yes, feeling like I would have been a bad mom if I said no. But then when my part of the paperwork came home, I did not fill it out, instead opting to get advice from a friend who is a child psychologist. He suggested that if an investigation was warranted that I go to a professional outside of the school system as they tend to look at all potential issues rather than just ADHD. Good advice and I chose not to follow up with the school assessment at that time.

My son is not unable to focus, or to hold concentration. He is just easily distracted by one or two things; Friends, and the opportunity for an audience. Given his aspirations to be a musician perhaps at least the latter is not such a bad thing.
So, when I entered the room and saw his teachers sitting in waiting I felt some trepidation. I felt for sure, this was it. Time to confront the ADHD issue. But, it didn't go that way. All of his teachers appeared to recognize that they had a talent on their hands. They understood the tragedy of suppressing the spirit in artistic kids, and they offered suggestions to help my son improve his grades without compromising his dreams or his social life. Small organizational tips, and gentle reminders that there us a time and a place for everything now seem to be keeping him on track. How many other kids are so lucky to have teachers like that? How many others would have been pushed into medications rather than viewed as unique spirits on their way to their own special destiny? A 2007 review in the American Journal of Psychiatry found that there is a worldwide prevalence of ADHD/HD of 5.29% and the US is similar. The use of stimulant drugs to treat ADHD is necessary in severe cases but the risk of over-prescribing and mis-use of medications is a concern for parents, teachers and doctors alike. It is estimated that about 1 in 8 children in the US take a stimulant such as Ritalin, or Dexidrine, in order to control their ADD or ADHD.
A Time Magazine article way back in '03 (http://www.time.com/time/magazine/article/0,9171,1101031103-526331,00.html) highlighted the dilemma of having pills that work to focus and calm anxious middle schoolers, versus the unknowns associated with such medical practices, mainly regarding effects of artificially modifying the emotional and behavioral control mechanisms that are still underdeveloped in kids of that age. We don't know much more now about the use of stimulants in kids than we did in 2003. If you learn to cope chemically in those formative years, does it compromise your ability to cope without the chemicals later on? It's a balance between doing well enough to stay in the game (with or without medication) and developing the life skills for a successful adulthood without reliance on those same medications. In 2008, it is emerging that teenagers are abusing stimulants to stay awake longer during crunch time for exams. The pill takers are raising the game. Reminds me of the steroid problems that athletes face. If one does it, the baseline is elevated and if you snooze you lose.
The pharmaceutical trade group PhRMA have suggested that up to 10% of American children suffer from some mental illness. I offer the notion that perhaps we are too eager to classify the considerable angst of teenager-hood as bipolar, ADHD, depression or any number of other maladies that can now be ameliorated with non-street versions of uppers and downers. The FDA also worries. But don't misunderstand me. I am not for or against these therapies, just very strongly in favor of a thoughtful process on a child by child basis before jumping to a label and a drug to fix it.

In the case of my son, I am still open minded regarding a diagnosis for his oddball characteristics. If is has troubles with his peers, or with authority figures, or with himself, that he can't deal with, I will take him in. At the moment, we (his teachers, myself and my son) accept that he has an unusually creative and sociable side that he must reign in at certain times, such as the classroom. They tell me he thinks beyond his years. He is not weird, doesn't need medications, nor therapy, and is doing quite well at school with the gentle nudges and organizational tools we are helping him develop. I am proud of his creativeness and his ambitions to become a professional musician. Luckily, his teachers are too.

Socially networked out

I'm exhausted from all my socializing, most of which I do from this very spot. Face to face with a 17" screen, I chat, play, work, sing (yes-I have sung to my computer and with the wonders of Logic Pro I can make myself sound like Celine Dion on steroids with a mere tap of a key), laugh and even sometimes, cry. I heard yesterday that about 10% of Americans are addicted to the internet and I understand why. The web has it going on.

Rather than talk about what's wrong with that (and there is much), I'm going to talk about the upside. Being connected is a fundamental human need. Being without a community is a bad for your health as giving up smoking is good (Bowling Alone by Robert Putnam--great book). Two days ago a far away friend mentioned how discomforting it had been to be 2 weeks without home internet when his system threw a wobbly. He felt like he'd been missing a friend, he said. Another friend in a far place asked me today if I had figured out what the point of Facebook might be. I had to think, because it wasn't immediately apparent. I have LinkedIn for serious work networking, I have YouTube for a laugh and to keep track of my musically prolific son, Plaxo Pluse for keeping in touch with old friends, and I have zaadz.com for the weird side of me that still believes in fairies. So what is Facebook for? It must be good for something. Sheryl Sandberg, Google's (ex) VP of global online sales defected to Facebook to become COO this week. I pondered my recent experience with it. Why, just in the last three days I was poked by two people I have never met, sent a leprechaun by someone I care a great deal about but rarely see, and turned into a vampire by one of the smartest and successful people I know, who should know better. Oh, and I threw some beads at a couple of folks as part of a bizarre on-line Mardi Gras party that seems to go on forever. Add to that the two games of Scrabble I'm currently playing with remote friends, it seems like Facebook might just be for plain fun.

All of these sites allow me to feel like I am part of the Universe as it moves along in time. I am part of the ebb and flow of my friends' lives in an unobtrusive but slightly voyeuristic way. It feels good to be connected, although I can't fully rationalize the value in a purely logical way. One thing I realized in all my pondering: Facebook does have a purpose. It is to remind us not to take life and ourselves so seriously, that there is no shame is getting of the perch of progress and regressing occasionally. So go on. Sign in and throw a few beads. You'll feel better for it, and so will those that receive.

FDA looks to 'broaden drug use'

According to the New York Time (Feb 16th FDA seeks to broaden the use of drugs) the FDA is considering allowing pharma companies to give doctors articles on off-label use of their approved drugs.  Docs have always been able to use their discretion to prescribe the drugs they see most fitting for a disease whether the drug is approved fro that indication or not.  However, the FDA has come down pretty hard on companies that actively promote their drugs for such off-label uses (A few years ago Pfizer had to pay up almost half a billion dollars for promoting an epilepsy drug for non approved indications that they themselves had data that showed it did not work for). Now the FDA is saying companies can give docs articles that show or suggest utility for indications other than currently approved, in the hope that 'life-saving' treatments can be more easily apparent to docs in deciding what to prescribe for their patients.

Off-label prescribing is usually good for pharma but not always.  A drug for macular degeneration, Genetech's Lucentis, suffered from same-company poaching when the same company's cancer drug Avastin was adopted by retina specialists as a cheaper alternative to Lucentis.  In most other cases off-label prescribing leads to more prescriptions written and higher sales for a given medicine.  If it benefits the patient, what is the problem with off-label prescribing and what the FDA is proposing?  Well, for starters, off-label prescribing is inherently risky.  The drugs in question have not been tested for safety issues in any group apart from the approved-for population and their proposed efficacy also does not have rigorous data behind it.  A second issue with allowing pharma companies to give articles to docs is that the companies can be selective about what they give, choosing to distribute only the supportive articles and not the detractors.   Rarely is data cut and dried and there is usually plenty of evidence to support a contrary view to the one that supports an alternate indication.  A third issue is that pharma companies often sponsor trials to show their drugs are useful for additional diseases. None of these points automatically mean it is unethical for anyone to show a doctor an article on anything that is out there in the public domain.  We know for sure that is is unlikely most docs get much time to go through the literature and develop a balanced view on what is out there.

So, where does this leave the issue?  Here are the 'facts':

1) Drugs often have uses beyond their current approved indication.  

2) Doctors are in a unique position to see their patient as a whole, and to prescribe what they feel is best for each individual

3) Pharma companies are often more aware of off-label experiments that most, and even sponsor a number of them

4) Doctors and health professionals do not have time for a regular detailed review of the literature

5) Pharma usually gains from encouraging off-label drug use 

6) Patients should be able to get access to the best drug for their disease, approved or not

The latter point speaks to an earlier argument where patients are not allowed access to truly potentially life-saving options because the drugs are in trial stage and not approved for anything yet.  If the patients do not fit the trial criteria (set to optimize the chance of success of a drug)  then they cannot get access to their experimental medicines. To my mind, this is where the most action by the FDA is required.  For many, these experimental drugs are a genuine last hope and I believe if patients are willing to assume the risk they should be allowed to take the meds.  

So this brings us to patients and what they are prepared to risk.  Since an off-label indication is risky, then shouldn't the patient also have a say?  I don't believe it is enough to 'educate' the physician with the articles as suggested by the FDA. Shouldn't materials also be provide for the patient?  Perhaps a balanced view of what is known and what is not, and a statement about potential risks acknowledging rigorous studies have not been done?  I think balance is the key for both docs and patients.  Give them the info, sure, but be sure all aspects are represented--then the doc and the patient can have the discussion and make the choice.  Seems obvious to me but I'd be interested in what others think.