Dear me, this IS going slowly. I shouldn't be too surprised I suppose. I do have a lot on my plate. Starting the Asshole Skeptic blog; finishing Beast of Bottomless Lake; doing final re-writes on another project; having a life; earning a living – the list goes on.
Here we are two full weeks after TAM (At about this exact hour two weeks ago I was standing in line at McCarran airport wondering why it was taking so long for every single person in front of me to check in to their flight and praying that Paul and I wouldn't suffer the same fate as it seemed to be causing not little amount of distress to the people actually talking to airline representatives.) and I'm still only just getting around to the first of the standard presentations.
Fintan Steele, besides having a name that evokes mid-80s TV has a resume that mind boggles. He works at Johns Hopkins and was at one point in time as an ordained monk.
His talk was one of the less easily followed of the entire weekend, but it was that way because it was crammed full of high-functioning information. He spoke about personalized medicine. "It's all the rage for pretty horrifying reasons."
He began with Hippocrates and the "significant step" that was the "the four humours." How having your humours out of balance was believed to cause virtually all maladies. If you weren't feeling well it was simply a matter of rebalancing your humours – black bile, yellow bile, blood and phlegm. Steele contends that Hippocrates medicine was effectively personalized medicine of its day. Each person was individually diagnosed and treated with the limited procedures of purging and bleeding and so one that were available at the time. They filled in the gaps – and there were many – with theology and superstition... aren't they the same thing?
After roughly two centuries of this limited form of medicine it became gradually apparent that environmental circumstances also impacted significantly upon a patient's well-being. (Funny how self-evident that seems now.) It was also noted that deliberate application of various compounds could similarly affect people in both positive and negative ways. Even to the point where a small amount of something might be positive, but a large amount would be detrimental to health. But it was still all very alchemical in its approach.
The line continued to be pushed further and further as we began to understand human anatomy and get a better observational sense of medicine.
He pushed on ahead to the current century (and I am a little unclear as to whether he meant that literally as in the last nine years, or if he meant it a bit more colloquially to include part if not all of the 1900s as well.) And how we have good analytical tools and a growing genetic understanding and a really quite remarkable knowledge base of how the human body actually works – all supported by the processing power and data crunching blunt force of modern computers. This has brought us to a place where we can provide the illusion of good understanding of precise personal circumstances and convince ourselves that there is a real opportunity to practice personalized medicine.
"This brave new world is driven by technology; basically science-based; and generally over-hyped."
I found this statement to be quite interesting. There is a lot of dealing in practical or actual absolutes in skepticism. "This IS true." "There is a utter lack of data supporting those claims." "The chances of that being true are diminishingly small." Yet here we had one of our first speakers of the weekend saying "Gee this is neat. It may even be close. It's certainly well-meaning. But we aren't really 'there' yet." The detractors of skepticism would serve themselves well to note that we aren't strictly sticks in the mud. We are merely cautiously pragmatic.
From there he moved into a discussion of genomics. The first genome was sequenced in 2003 for a cost of about 10 billion dollars. Of the data collected, roughly 1.5% (a bit more) currently means anything to us. Since then the speed and cost of sequencing had dropped considerably. "By this time next year it will be possible to sequence an entire human genome in a week for the cost of about a thousand dollars." As a result we are gathering useful data at a huge rate (currently 3 petabytes) and increasing fast – with a major point being that variability is vast and countless.
Sampling the genome is much cheaper than full sequencing – so we can look at relevant areas and skip the parts that can be predicted with accuracy or that aren't relevant. IE. If you are concerned about a specific inheritable disease (there are many if you include propensities), you can look for that disease's genetic flags and ignore eye-colour. There are plenty of 'association areas' for different diseases – I assume that means correlated genetic patterns – and this IS cool information.
As time has gone on different diseases have fractured. Steele uses the example of leukemia – which prior to the 1900s was indistinguishable from lymphoma, but then became identifiable as a separate disease. It then fractured into acute and chronic forms and by now is a spectrum of various types of leukemia – to say nothing of over fifty different lymphoma types.
This growing awareness of variety helps us understand why some people respond to certain drug but not others. Some people might have a specific genetic pre-disposition to react favourably to certain medications. See where this is going? If we can understand the specifics of a person's genetics then we can recognize how they will respond to different treatments, or narrow down the possible specific maladies they might be more susceptible to. We are walking towards the notion of personalized medicine. But we are not there yet. Recall we have only got 1.5% of the information applied in any useful manner.
The promise of personalized medicine is still premature. Yet it has still entered the marketplace. Companies say that they can provide it, but it is a lie. Statistically there are still far too many holes (which on an editorial note, I suspect are in part the exploitational opportunity that is needed for said companies to be able to take advantage of people) for true efficacy.
The science behind it is solid. But the reasoning and expectations that have followed is where the failure lies.
He then moved into a tangent about how ordering your moral hierarchy of a list of various acts – including masturbation, incest, homosexuality, rape, and beastiality amongst others – depends on your first principle. If you believe sex is foremost about procreation, you order the list differently that someone who doesn't. It was interesting, but I don't really think it was necessarily relevant to his larger talk.
His following point essentially pointed out that our scientific knowledge when compared against biological complexity has (my term) a breaking point. We absolutely DO understand a lot. But it is easy to misapply the bleeding edge of that knowledge. Anything beyond that line is hokum – magical thinking. Genomic study is not to be dismissed – it is very important but it is far from really being an understood and manageable knowledge base. But our current appearance of dominion is illusory hubris. For one thing, the understanding of genomics is working towards understanding how biology works – not how the individual works. Perhaps we'll take that next leap some day, but it's not today and it's not in three years when we can sequence a genome between breakfast and lunch for two hundred dollars.
Personalized medicine is popular because its "all about me" and we are narcissistic at the core. It sounds scientific – it uses the language of science. It doesn't take a fool to fall for this – not at the least.