Kim Goodsell was not a scientist, but she wanted to understand the baffling constellation of disease symptoms that were affecting her. The doctors delivered partial diagnoses, that accounted for some of her problems, but not all. So she plunged into the scientific literature herself. The point of the linked article is that there is a wealth of genetic information out there, and that we might someday get to the point of tapping into the contributions of citizen scientists. But I thought this was the most interesting part:
She started by diving into PubMed—an online search engine for biomedical papers—hunting down everything she could on Charcot-Marie-Tooth. She hoped that her brief fling with a scientific education would carry her through. But with pre-med knowledge that had been gathering dust for 30 years and no formal training in genetics, Kim quickly ran headfirst into a wall of unfamiliar concepts and impenetrable jargon. “It was like reading Chinese,” she says.
But she persisted. She scratched around in Google until she found uploaded PDFs of the articles she wanted. She would read an abstract and Google every word she didn’t understand. When those searches snowballed into even more jargon, she’d Google that too. The expanding tree of gibberish seemed infinite—apoptosis, phenotypic, desmosome—until, one day, it wasn’t. “You get a feeling for what’s being said,” Kim says. “Pretty soon you start to learn the language.”
I know that feeling! I watch students struggle with it every year, too. There is a certain level of biological literacy that has to be met before one can grasp the more sophisticated concepts — and that once the door is opened, it becomes easier and easier to go deeper.
Someone who is strongly motivated and determined, like Kim Goodsell, can do it on their own, but I really feel that achieving that basic level of understanding is the goal of an undergraduate education. We prep students with enough information to get over the threshold (and also, maybe, some specific skills to get them started in professional schools), so that in an ideal world they can then charge off and keep learning on their own.
This isn’t just true of biology, either. Literature, art, history, philosophy, economics, psychology, etc., etc., etc. all have a set of fundamental concepts that are hurdles to getting started…but once you’re over them, you can soar.
Yup – the best way to get a high-school education is to go to college.
What I tell interns that come through our IT division every year. Your education is there to teach you basics, to teach you concepts, and to teach you how to learn. Once you’re out of school, you’re going to spend the rest of your career figuring out an ever-increasing list of stuff you don’t know.
Yup. College didn’t teach me to be an engineer, actually doing engineering did. And I’m still learning at 65.
@krambc #1
The goal of secondary education is to give a broad awareness and surface knowledge of a multitude of subjects.
—
This is true. Yet we have far more people thinking that they know as much about those subjects as the people who are educated in them than do biology and other “hard” sciences.*
*creationists and other assorted science denialists excepted
A chemical engineering professor of mine 40 years ago encouraged us to “take an introductory course in everything. Once you learn the jargon, you can get everything else you need from the library.”
Thanks for this post, PZ.
Still learning,
Robert
This is exactly why the accusation that it takes more faith to accept evolution than creationism falls flat. The closest thing to faith I hold is that if I take the time to do what Ms. Goodsell did, I can understand the parts of genetics, for example, that I don’t understand with my current knowledge. Even this is not faith, because I observed this happen during my undergraduate and graduate education.
Music. If you care to, there’s so much to learn. I can never figure out those peole who say they’re bored. There’s always a new technique to learn, a new line to learn, a new idea to explore.
I think this also shows why scientific journals should be more available than they are. Most the research was paid for with tax dollars and should be avail without having to pay a subscription. If articles were easily available more people would probably read and understand them
It was pretty difficult getting into brain anatomy and other unfamiliar disciplines and I had a masters in Cell and Molecular Biology and two semesters as a neurobiology TA to help me.
I have much respect for Kim Goodsell.
I also feel a lot better about taking the approach of teaching other people how to look at papers as best as I can in other places.
Trebuchet@3
You are so right! I learned more about the Latin language, Roman culture and ancient history every single year when I was teaching.
This is why I would get so upset at administrators, school boards, etc. trying to tell teachers what to teach, when to teach it and how to teach it when they know nothing at all about the subject.
I think that students would learn so much more if only schools would trust their teachers and allow them to lead their students into understanding those basic concepts and the jargon of their subjects.
Insert obligatory comment on US education system here.
QFT.
Like Kim Goodsell, I’ve done a lot of research into the issues with which I’ve been diagnosed.
I’m not trained in science, but those basic research techniques that I learned from my excellent liberal arts education came in handy.
I’m lucky that I have a scientist in the house to talk to when the jargon gets just a bit too deep for me.
Between the two of us, we have a good knowledge of my medical issues.
Don’t even get me started about doctors who try to talk down to me and criticize me for doing my own research!
@ Karl Mann
1000% yes!
While what I have had access to has been invaluable in understanding the storm in my head, there are some things that have been critical that I had to get at someone’s lab, get sent to me, or even *acquire”. My tax money paid for it, and frankly if it involves general knowledge of what it is to be human no one should get to keep it from us. Too much of what is wrong in the world involves not knowing what we are really like and we can use all the ammunition we can get to use on ourselves and bad ideas.
Something that’s fairly necessary to be able to understand any research is a basic grasp of statistics. I wish we focused more on that, and see no reason why some statistical literacy should be uncommon.
magistramarla at #11:
Yes, and also trust the students. What we know from the educational psychology literature is that learning takes place much more effectively when the learner directs the learning, but many scholastic institutions somehow interpret that to mean “THE STUDENTS WILL JUST RUN WILD AND THERE WON’T BE ANY TEACHERS!!!11!11!endofcivilizationasweknowit!!!”
Still learning,
Robert
smrnda at #15:
Oh, yes, indeed.
Still learning,
Robert
When I finished my undergrad, I felt like I had a good handle on things. Then I started my graduate program and now I feel like I don’t have a clue. I constantly run into methods I’ve never heard of, words that are complete gibberish and problems I have no idea how to solve. I hope I’ll at least get some idea by the time I have to hand in my thesis.
I made the mistake of going to a Catholic apologetics website the other day, in response to a blog post about homosexuality. I don’t know what I expected, in hindsight, but boy was there a ton of scientific illiteracy and logically flawed arguments. Really basic stuff, too, but when it conflicts with your ideology….
Jargon is often looked down on, but actually you can say more in three jargon words than you can in several paragraphs of “common” speech. The problem as Ms. Goodsell found out, is that you have to learn the jargon, which in complex areas of study can take years.
Ms. Goodsell is a paragon. She actually got a good education in the subjects she was interested in. As an archaeologist, I’ve run into too many “citizen scholars” who think they have educated themselves by reading 6 or 8 books, always from points of view they agree with and almost always 30-50 years out of date. It’s not that I distain “citizen scholars”. I have known many who knew more about some aspect of my speciality than I did. I learned from them. The advantage of a formal education is that you are given a structure within which to study. It is certainly not the only way to go about it.
___________________
As for the statistics, I think the little book How to Lie with Statistics by Huff should be required reading for high school students. It is even, I find to my delight, available online.
The Jargon is the easy stuff to teach with computerized programmed learning. I have a vision of some of our secular organizations funding the writing of such programs and putting them out on the web for free. After all, we all know that a little education and a desire to learn is all it takes to set a person on the road to becoming a secular.
Another good reason for total open access is that more amateurs with good reasoning and analytical skills will be able to deal with crap like this.
http://occidentalascent.wordpress.com/2012/06/10/the-facts-that-need-to-be-explained/
People like this are the ones that spread deceptive portrayals of science like that popularized by Nicholas Wade. Black and white implications and conclusions from incomplete and selectively presented science read within profoundly prejudicial and discriminatory frameworks. It’s hard to fight without more and easier access to scientific information for more people.
I just finished reading the article that PZ linked to, and boy did it ever sound familiar to me!
Here are the diseases with which I’ve definitely been diagnosed:
Meniere’s disease
Spasmodic Dysphonia
Sjogren’s Syndrome
Osteonecrosis
Spinal Stenosis
Here are the ones that have been suggested, but mostly ruled out:
MS
Parkinson’s
Spinocerebellar Ataxia
Lupus (still a maybe)
Rheumatoid Arthritis (still a maybe)
I’ve asked many times whether any of these could be related, and was mostly laughed at or ignored.
Finally, one doc thought that since the Spasmodic Dysphonia that affected my vocal cord was a neurological problem, perhaps my constantly contracted calf muscles were somehow related and thought that a neurologist should check for Spastic Paraplegia. I didn’t have any of the usual genetic mutations for that, so it was dropped.
We’ve moved, and now another neurologist is once again bring up Spastic Paraplegia and also thinks that it is somehow related to the Spasmodic Dysphonia. He’s wanting a full genome workup done.
I understand the frustrations that Kim went through. We patients know what our bodies are telling us, and we patiently try to tell each doctor all of the symptoms. I’ve found that many specialists are impatient and only want to deal with those symptoms that fall into their specialty. The thing is that all of the symptoms together are what is affecting the patient.
Doctors need to listen to the patient and be willing to work with other doctors to treat the whole patient, not just the parts that are of interest to them.
OK – that was my rant for today.
Yeah it’s a slog, finding that many, if not most, definitions contain more unfamiliar words that one will need to look up. But for those old enough to have carried on such pursuits in the olden day, today it seems, well comparatively, a pure pleasure.
Lug the books home on the bus, compile pages of words until you’ve amassed enough to make the bus or car trip to the public library (or the University, depending ) worthwhile.
Not to mention the six feet of snow.
If it helps anyone I actually made a post on a Tourette’s Syndrome forum about what I think are cognitive strengths associated with TS, and the conversation got around to how to get better at accessing scientific information. Here is the post I wrote about the process. I hope it is helpful to someone.
http://www.tourettesyndrome.ca/showthread.php?7399-Taking-possession-of-your-TS-related-cognitive-strengths&p=38806#post38806
Magistramarla,
Yeah, my ex used to tell his students “LISTEN to your patients. They will tell you what is wrong. They don’t have the vocabulary, don’t understand the systemics of the human body, and usually know very little of the range of possible diagnoses, so your job is to know all that but if you listen to them you will learn enough to know where to start looking.”
Of course he’s board certified in three major specialities, so he doesn’t tend to focus only on one aspect of the complaint.
I understand the meaning of the first two, but the third is absolutely new to me.
It just goes to show, there’s something new every day.
Now where’s my dictionary/textbook/search-engine-which-shall-not-be-named…?
@magistramarla #23:
And a very worthwhile rant it was, concluding with the sentence before last.
I’m reminded of the mechanics I used to use. I brought in a previous car which had developed an annoying problem where (usually when abruptly decelerating at low to moderate speeds and then trying to accelerate) the engine would simply stall. My observation was that it seemed like the fuel flow was getting interrupted, and that this suggested something might be wrong with the fuel line or fuel pump. Their response when I got it back, both times, was that the engine wasn’t giving an error code, so they couldn’t tell me what was wrong.
Eventually the car (which was technically company property) was sold to a now-former coworker, who quickly diagnosed and replace the fucking fuel pump and last I heard was pretty happy with it.
Yeesh, it’s bad enough with the non-meat mechanics…
Also, see this:
“Can the Crowd Solve Medical Mysteries?”
By Carrie Arnold on Wed, 20 Aug 2014
http://www.pbs.org/wgbh/nova/next/body/crowdsourcing-medical-diagnoses/
Paywalls, people.
Paywalls, paywalls, PAYWALLS.
Kim Goodsell:
Disclaimer: I have weapons-grade ADHD, a comorbid mood disorder, and neurological issues that would admittedly be mere inconveniences if not joined with the previously mentioned factors.
I’m not here to whine about any of that, because many people have it much worse, including some who regularly participate on this blog (though this could be said of any minimally inclusive social subset). Making my own protestations even less central to anything at all is what affects me more directly on a day-to-day basis: that my daughter struggles with very similar issues. And she’s brilliant (per actual testing). That brilliance is generally shielded from the light of day by those issues. And I can say – again without a drop of whine and as a general statement – that I am directly aware of the blast zones these issues can potentially cause in a life.
So for a variety of reasons, including being curious, research-oriented and poorly educated, I have spent years digging for meaningful findings regarding ADHD, its comormid conditions, and neurological research, and with much effort there have been some useful results. In this particular case it seems to be made more difficult by the fact that they touch on the peculiar, scattered and freighted field of psychology, in addition to being cluttered by alternative and, um… “skeptical” bloviating (some of which we’ve recently seen in these environs).
I will (vainly) attempt brevity by stating the sources of my anger related to the OP topic:
– I do think Kim Goodsell is exceptional, though I believe her decency, compasion and general ability to hope and persevere cause her to be unconcerned with the question. In deference to her view of herself, I will say that she may not be ultra exceptional in that others would likely persue a similar course of discipline and study if the possibility of doing was more obvious. I VERY STRONGLY believe that there are numerous non-professional, unaffiliated minds in the wild that are fully capable of becoming more involved in improving their own lives and – at a minimum – some small but meaningful bits of the world at large if only current, publicly funded findings in real science were made more available. And a note to any “professionalists” out there: Yes, some people will mangle the complications and confuse things further, but I seriously doubt any such confusion could approximate that caused by Dr. Bob’s Amazing and Revolutionary Internet Scientific Truth Palace™© and its various analogues. (And,as an aside, I can’t help but wonder what Kim Goodsell would have done with more universal access.)
– And finally, this: The act of placing work that has been touched by public funding behind a paywall should be an act of treason. As for those who manage to independently fund access to the keys of misery and its alleviation – and obscure that access for the sake of inordinate gain – may a thousand travelling, self-replicating hells reside forever in their underwear drawers.
Damn. I type the word “and” a lot.
Now scouring the internet for “autonomic conjunction specific keyboard disorder.”
Probably need to look into related quotation disorders as well.
And “paywall vaulting.”
Oh my giddy aunt. Charcot-Marie-Tooth.
When I was diagnosed, I too thought it might be useful to do some research. As it happens, with all the variations and other features, it seems to be an absolute goldmine for PhD candidates. All over the place, there are families and localities with their own barely discernible, finely calibrated differences from other families and other localities. By the time I’d got through about 40 papers discussing half a dozen or a couple of hundred individuals and their associated genetic abnormalities, I thought I’d had enough.
Unless you go the whole hog as Kim Goodsell has done, there seems to be no way to find out what your own particular condition has in store for you. My diagnosis was for the Hereditary Neuropathy with Pressure Palsies version, not the classic Charcot-Marie-Tooth. So how come I had the whole deformed toes, ludicrous instep and wasting leg muscles of the “classic” diagnosis? As well as seeing my father’s hands deteriorate into the distinctive CMT question mark shape that is the result of all the muscles wasting away there.
I decided that I’d just get the podiatrist to fix me up with the foot supports to deal with feet that look exactly like the wiki illustration, and also forever eschew bras with straps – those and carrying bags from a shoulder strap are guaranteed ways to put pressure on the nerves leading from the neck and numb the hands. I could also find nothing in the few dozen papers I’d looked at to help with working out how the associated fatigue is provoked or assuaged. I would also have much preferred a neurologist who didn’t sneer, snort and complain when I reacted to the pain of the electronic “stimulation” testing the speed of nerve responses.
Then I had a student turn up for tuition. Eight years old and with her ankles and lower legs already in supports (modern plastics are much better than older technology for this sort of thing) I counted my lucky stars. I at least had had the chance to play tennis and netball before my ankles gave out when I was 14, and I was able to wear high heels and go out dancing into my 20s and 30s. This kid was glad to be able to walk at all.
I am so tired of repeatedly telling our executives, managers, and hired guns (“consultants” — a profound waste of money) this… and with statistics to back it up, e.g., defects reported and time expended to fix whatever it was the supposedly-“expert” consultant did. And estimates of the costs of refusing to pay for training / continued-education of the staff (such as myself). And there are no fecking “postmortems” (debriefings) to highlight points — Good and Bad — about any project. Education?… what the feck is that!?
We all understood that at my undergraduate (Harvey Mudd). There was a common core of classes in math, physics, chemistry, engineering, and computer science, all taken in the freshman year. But then there was that first sophomore class in a particular major that, among its many purposes, was designed to let you know if you could actually manage that field. This was where you were first introduced to “real” work in that field. Yeah, you may have had calculus and linear and diff eq, but mathematics isn’t really about that. Fundamental Concepts of Mathematics (or Real Analysis) started showing you how deep math gets done. Physical Chemistry where you get questions like: Given the Ideal Gas Law, prove the sky is blue (or it’s inverse: Given the sky is blue, calculate Avogadro’s Number.) Every field has this moment of selection where you find out if you can hack it.
I don’t mind jargon, per se, but long ago lost patience with poor, unclear, pedantic scientific writing where the author uses jargon as a substitute for clarity, to try to impress their fellows, or to cover their lack of accounting for details. I often find myself wading through a paper writing notes, such as “”was done” or “is noted” by whom? When? Where? Always? Sometimes? Rarely?”.