Sorry for the delay in posting this--it was a combination of other distractions and hoping that Dr. Steele would reply to the email I sent him asking for some details on his slides, without any such luck. Unfortunately, I was manning the SkeptiCamp booth at the back of the room during his talk, which both impaired my ability to take notes and made it impossible for me to read much of anything on his slides. If any readers have better notes or memory, I would be happy to make revisions to correct mistakes or add further detail. (I had wanted to point out a semi-ironic comment that Dr. Steele made before he began, but I couldn't remember exactly what he said and failed to note it.) [UPDATE (March 21, 2010): Now that Randi has officially come out, and I've remembered approximately what was said, I'll note it here--Steele began by saying something about being preceded by "two straight men" (apparently meant in both senses), who were Phil Plait and James Randi.]
Dr. Fintan Steele
Dr. Fintan Steele, a gay (and legally married in Massachusetts) ex-Benedictine monk with a theology degree to accompany his Ph.D. in genetics, spoke on the subject "Personalized Medicine or Personalized Mysticism?", a talk which bore some resemblance to his paper in Future Medicine, "Personalized Medicine: Something Old, Something New" (PDF). He said that he's moved from the monastery and theology to science, and that he (we?) wants to keep them separate, suggesting something along the lines of Stephen Jay Gould's non-overlapping magisteria (NOMA) view, which argues that science and religion are separate domains which do not overlap. It's a view that hardly any advocates of either science or religion hold, and it's hard to see why they should. When religions make empirical claims, that's surely the domain of science, and it's also surely the case that philosophical arguments should be informed by relevant scientific data. The argument in the other direction is, I think, a bit more difficult to make, at least until religion develops methods that are reliable, reproducible, and objectively demonstrable--but at that point it would be science.
He began with a familiar quote from Hippocrates that also appeared in Dr. Val Jones' presentation at the Science-based Medicine conference, "Science begets knowledge, opinion begets ignorance." To which he commented, "but not always." He then gave a Webster's definition of personalized medicine, and said he will argue that this is a mystical rather than a scientific definition.
Dr. Steele proceeded to go through a brief history of medicine, arguing (like in his paper cited above) that personalization of medicine is nothing new, but has been with us since Hippocrates, who used thought that medical treatment was a matter of putting the four humours into proper balance, idiosynkrasia (idio = personal, synkrasia = mixing or blend, or, in the context of the humours, temperament). Galen went on to do "tests" of patients to determine proper treatments, and Paracelsus introduced environmental factors and the concept of proper dosage.
He then briefly talked about the science of DNA and what is being learned as the cost of sequencing becomes cheaper and the volume of data increases. He said that there is "tons of sequence variability" and we're learning about ways that DNA can be "turned on and off." At his current place of employment, the Broad Institute, he said that they have a very large amount of genetic information on servers. He talked about the genome and made reference to a Bligh study (?) and to genome-wide association (GWA) studies. These studies involve genotyping lots of individuals and looking at where they differ. For example, he noted that you might compare the genomes of 10,000 people with Type 2 diabetes to 10,000 people without it, and then look at the differences in order to find areas that are associated with the disease.
The catch of these studies is that the genome information collected is incomplete, relying upon samples of specific single nucleotide polymorphisms (SNPs) within a haplotype block, which Dr. Steele characterized with the analogy of using a single house in the block to stand as a representative sample for the block--the method of finding a difference can tell you that there's a fire in the block, but you still have to go house by house to find the blaze.
He noted that this technique has been successfully used to find genetic correlates to a variety of diseases and conditions, including Crohn's disease, breast cancer susceptibility, coronary disease, prostate cancer, macular degeneration, and schizophrenia. The research has started to fragment diseases into finer-grained categories. We've gone from blood diseases to leukemia vs. lymphoma, to 38 leukemia subtypes and 50+ lymphoma subtypes.
He seemed to be approving so far, but indicated that there is then a line that people cross and draw wrong conclusions. He identified a number of the genetic testing companies, such as Navigenics and 23andme, as culprits. These companies, he said, will tell you something like "Because you have a particular variant x, your risk of disease y goes up by z%. So go eat more vegetables." But, he said, "It's a lie. Reasoning and expectations have gone astray."
He then turned to theology to draw an analogy that I'm afraid completely escaped me. He asked us to conduct a reasoning experiment about constructing an ordered list of things you can find in Las Vegas by moral acceptability, from premarital sex to rape, including bestiality, incest, masturbation, and contraception. Constructing such a list relies upon some kind of underlying principle based on beliefs. He then offered the Roman Catholic Church's ordering, based on the out of print Handbook of Moral Theology (by Anton Koch, volume 2 is online), which gives an ordering of sexual sins based on gravity, and puts masturbation as the very worst, homosexuality less bad, incest less bad still, etc. Why? Because "Sex is primarily for procreation. That's a scientific statement," he said.
I have a couple of problems with his argument so far. First of all, I think his "scientific statement" plays on an equivocation on purpose vs. function. The reason sex exists--its function--is for procreation, but that doesn't make it our primary purpose in having sex. Second, even given that fact, the proposed RCC ordering doesn't follow. Homosexual behavior is no more likely to produce offspring than masturbation, and thus should be equally bad--if that's the only relevant factor, then each act should be ranked based on the probability that offspring will be produced. By the same token, premarital heterosexual sex should be on the good side of the spectrum. Third, probability of procreation is clearly not the only relevant factor in making such an ordering, even if we limit ourselves only to other "scientific statements" such as "people tend to seek pleasure and avoid pain" and "consensual relations are less likely to produce physical or psychological harm than involuntary relations."
He then asked the question where do we get the principles based on beliefs that we use to construct such orderings? He answered that we get them from two places, 1. rational observable scientific thought, and 2. metaphysics. He then said something about science resting on metaphysical claims where I missed the details. I'm not sure if he was asserting that all science rests on certain metaphysical claims (which I think is quite plausible--we tend to assume that there is an objective external world which can be measured, that we're not brains in a vat or solipsistic dreamers), or that the science of the companies he's complaining about are making unwarranted metaphysical claims. I think the latter was more likely his point.
Dr. Steele then asked, "What explains the popularity of these genomics startups? [The view that] DNA is the fundamental part of your being. That's a load of shit." Here again, I think he's made a somewhat ambiguous statement, depending on how one caches out "fundamental"--clearly, our DNA is a very important determining factor in who we are.
He objected that these companies are engaged in hype and overselling, and so is the NIH, in order to allow for continued funding. But, he said, it's based on "a mystical interpretation of genes. Biology is hugely complex and we're just beginning to understand it."
He then offered a diagram with two triangles listing some bullet points or statements, and drew a dividing line between science and mysticism. I was unable to see his diagram or where he drew the line, and I cannot tell from my notes or memory of hearing his talk what he used as his criterion for drawing the line.
Dr. Steele then went on to say that he's not trying to dismiss the genomics studies, but what's more important than the genotypes is what we are learning about pathways of interaction. For example, in the case of diseases that affect vision, what becomes important are things like the photo-tranduction pathway, which is implicated not only in vitreoretinopathy, but a certain type of colon cancer and other diseases. He suggested that medicine will become more about pathways than about individual organs. But this won't be personalized at the level of an individual, but rather on the categories of pathways.
The genomics/personalized medicine language is popular, he suggested, because it's narcissistic. And it costs a lot, so people infer that it must be worth something.
He also said that "it doesn't take a wacko to shovel nonsense"--the press regularly gets it wrong. For example, he said that "there is no gene for kidney disease." He suggested that journalists challenge the scientists promoting personalized medicine to explain how they think it will produce the results they claim.
In the Q&A session, he gave a specific example of an acquaintance, a D.C. lobbyist, who purchased his Navigenics portfolio, which told him he had a low risk of heart disease and glaucoma--but he already had glaucoma. In answer to a question about gene patents, he said that the Broad Institute, which is an offshoot of the Whitehead Institute, doesn't do patents, and that he thinks the problem that gene patents are causing for chip-based assaying of genes is ultimately going to cause them to be thrown out. In response to a question about the ability to tailor drugs specifically based on genetic information, he agreed that yes, this can occur "for certain very rare things," but that "DNA is just a recipe, environmental changes have huge impact. Few diseases are related to just a small number of genes. ... Genes that encode [such things as] drug transport molecules ... will be useful for ... drug dosages."
(Orac commented a bit on Dr. Steele's presentation in his post-TAM summary. A video excerpt of Steele's talk may be found here.)
Phil Plait spoke briefly about the vaccination drive, gave more thanks to the JREF staff, and had Paul Anagnostopoulos talk about the JREF scholarships. Paul noted that 41 people were attending TAM7 as a result of scholarships, donations for which were at an all-time high despite the economy. He also noted that JREF is offering $10,000 in academic scholarships this year, and encouraged students to apply. (The deadline is rapidly approaching--they must be received by August 1.) Those scholarships are due to a grant from a generous family in Florida.
He then gave up the rest of his time to Robert Lancaster of the Stop Sylvia Browne website.
Robert Lancaster came up to the front of the stage in a wheelchair after being introduced by his friend J.C. He explained that he suffered a stroke last August, and has spent the last 11 months in the hospital and in rehabilitation, and so many of his planned newer sites (Stop John Edward, Stop Benny Hinn, and Stop Peter Popoff) are still in development. He noted that last year he had jokingly referred to Stop Phil Plait at TAM6, and someone registered the domain while he was still speaking.
He said that he planned to talk about strokes and skepticism, and wanted to talk to other skeptics who have had strokes, of whom he talked to only one, Derek Colanduno of the Skepticality podcast, who has made a full recovery. He warned that he suffers from emotional lability, a condition of excessive emotional reactions and mood changes, and that this would explain if he suddenly became a blubbering idiot.
After telling a few stories of his rehabilitation, he gave thanks for the generosity of members of the JREF Forums who have helped him out. He told the story of his first discovering James Randi by seeing him on Johnny Carson's Tonight Show in the 1970s, and "opening a can of skeptical whoopass" on Peter Popoff in 1983. Randi, Lancaster said, had showed him that skepticism can be a form of public service, and that's what he's tried to emulate with his websites.
He first contacted Randi, via email, in 2001 after seeing John Edward on television. He figured Randi was the right guy to deal with Edward, and came across the randi.org website and sent an email, figuring some staff member might read it and give it to Randi. To his surprise, he got a personal response from Randi--which he characterized as "use the search engine, putz." (I'm hoping that weren't Randi's actual words, but Lancaster's feelings about the answer, which was that there were already multiple articles exposing Edward on the JREF website.)
Lancaster then returned to the story of his stroke recovery, and how after his previous wife left him, he found Susan via match.com, and they exchanged photos, email, and phone calls. After they had met in person, he asked her why she hadn't commented on his initial photos--she said they were "scary" because she thought he "was a biker." She concluded that no, "he was a teddy bear." They married five years to the day after their first date, on June 1, 2007. Without her, he said, I would be dead right now, and that without her, his life would not be worth living. He asked her to come on stage with him.
He then told the story of how he came to have his stroke. He said that 15 years ago, he had a bad headache that he should have gone to see a doctor for, but he went to bed, and woke up with the same headache. He went to his doctor's office, but the doctor was out, and the first assistant to take his blood pressure said, "That can't be right," and went to get another. Two more assistants took his blood pressure, were confused, and called the doctor to report. The doctor told him to either drive himself immediately to the emergency room or to let them call an ambulance for him, because his blood pressure was 300/180.
I had been a little queasy and light-headed listening to the references to strokes, for a variety of reasons that include a bit of hypochondria, drinking a cup of coffee, having little for breakfast, and having a bit of a hangover. Having a persistent sinus infection that I'm still fighting today wasn't helpful, and the pain in the left side of my neck (which I now know was lymphadenopathy from that infection) served as creative material for my hypochondria. I ended up having to leave the room and have a seat in the hallway to turn my thoughts to more pleasant subjects.
I waited until I heard applause from inside, and returned to the SkeptiCamp table sans camera, to find that Lancaster was actually still continuing on about various subjects. At some point I believe his wife assisted in cutting it short (he had gone some ways into lunch time), and I ended up still being a bit shaky through lunch.
I ended up losing my camera for the rest of the day, and getting it back from the registration desk the next day (thanks to both whoever turned it in and the gentleman who told me via Twitter that it had been turned in).
(Part three of my TAM7 summary, on Jamy Ian Swiss and James Randi, Jennifer Ouellette, the anti-anti-vax panel, and Joe Nickell, is here.)