The Translation Gap

One of the coolest things about knowing stuff about science is that you can predict the future. As a teacher, I’ve always taken pride in the various predictions I have made that have come true. Most notably, I predicted the demotion of Plutoas a planet, the flooding of New Orleans, and Japan getting hit by anearthquake of monstrous proportions – all well in advance of the actual events. I’ve made other predictions that are still pending (the flooding of New Orleans again, a more devastating pandemic virus, a significant cosmic collision in the next century, the country that figures out cheap renewable power economically dominating the world over the next couple centuries). Most of these predictions aren’t particularly insightful or my own – more just me repeating what I’ve learned from people much smarter and more academically accomplished than me. However, in this article, I would like to introduce a prediction that I believe is both uniquely mine and fated to be true.

CENTRAL DOGMA

Francis Crick's Central Dogma

To guide this essay, I’d like to borrow and idea from Francis Crick. In 1958, Crick stated the “Central Dogma of Molecular Biology”, which goes something like this: DNA replicates itself and transcribes information into RNA, and RNA translates that information into proteins. The terms “transcription” and “translation” are carefully chosen as they are borrowed from linguistics. ‘Transription” is rewriting something in the same language (DNA and RNA molecules are made of the same stuff), whereas “translation” involves converting something from one language to another (from DNA/RNA language into the language of proteins).

My own twist

            I’d like to state my own central dogma of health care. Scientists guide their own research and transcribe their information for the benefit of health care professionals. I associate this exchange as “transcription” because scientists and health care professionals are both fluent in the language of science. That information is then translated by health care professionals for their patients. I’m associating this exchange with “translation” because the average guy at a bus stop is most likely not able to digest a scientific journal article on contemporary molecular genetics.

TRANSCRIPTION: SCIENTISTS TO HEALTH CARE PROFESSIONALS

            It is no stretch of the imagination to suppose that the world of medicine will be improved greatly as our understanding of genetics improves. It is possible that reviewing our genetic sequence will become a part of regular checkups within 10 years – certainly within 25 years. People are already having their DNA fully sequenced in anticipation of this, and it is getting cheaper to do so all the time. The National Human Genome Research Institute set goals to cut the cost to sequence an individual’s DNA to $100,000 by 2009 and to $1,000 by 2014 (and it seems we are ahead of schedule). It won’t be long before having your DNA sequenced will be as routine as having a blood test. It has been a long time since there has been such a big change in health care. I think it is fair to say that the forthcoming impact of genetic information on such a huge number of issues in health care will be the most dramatic revolution in the history of medicine.

None of this is particularly Earth-shattering, even if it sounds good to make predictions like this in my grade 12 biology classes.

TRANSLATION: SCIENTISTS TO DOCTORS

Understandably, there has always been a significant discrepancy in knowledge between doctors and patients. Studies are conducted on an ongoing basis on this discrepancy and how effectively the gap is bridged by doctors. Even at this stage in history, this is an important issue that significantly affects the practice of medicine.

However, bringing genetics into this adds a much greater complexity of information to the doctor-patient dynamic. As it stands, the average patient knows their body and can learn more about whatever part is bothering them. They understand information about blood, diet, exercise, surgery, pharmacy and physical therapy, and could probably recognize many internal organs by sight. However, the vernacular of genetics is not common knowledge and may not even be something that many patients can read up on in order to come to grips with what is going on in their treatment.

As a high school biology teacher, I have a decent idea of what people know (and don’t know) about science in general, and genetics in particular. Where I live (in Ontario, Canada), students are only required to learn about science through grade 10. In that time, they learn almost nothing about genetics. High school graduates who take the minimum amount of science in high school will only be able to tell you that chromosomes contain genetic information and are the blueprint for the cell, and that they are copied during cell division. That said, many students go on to take biology in grade 11, so they will be exposed to Mendelian genetics and a basic overview of the construction of the DNA molecule (there are four bases, and how complementary base-pairing works). For the significantly fewer number of students who take “university preparation” biology in grade 12, they get a far greater exposure to molecular genetics. In my experience, I would say only about half of these students actually “get it”, though they are certainly exposed to a lot of information.

LOST IN TRANSLATION

This brings us to my prediction. The discrepancy in knowledge between doctors and patients – already a big issue – will become a full-fledged crisis in patient care as genetics becomes central to health care. The title of this article – The Translation Gap – refers to this enormous discrepancy in knowledge and all of the issues that arise from it.

As it stands, there is no age group of society that is well-prepared with the rudimentary knowledge necessary to process medical treatment that is centered upon their genetic makeup. Consider…

            ** Elderly patients were born before mankind recognized DNA as hereditary material. In most cases, these people probably know almost nothing about genetics

            ** Patients of the “Baby Boom” generation, despite having grown up in a world where DNA was better understood, are also unlikely to have more than a superficial knowledge of genetics

            ** Patients born in the neighborhood of 1960 – 1980 would generally know a bit more about genetics, but probably not much more than what is revealed in the average prime-time television criminal/forensics drama series.

            ** The current “youth” (people born 1990 – present) are not learning much about genetics either.

            ** Without significant changes to the science curriculum moving forward, the education system will continue to produce citizens with very limited knowledge of genetics.

I should also mention what I regard as a smaller, though not insignificant issue. I feel it is fair to wonder whether or not we will also experience somewhat of a breakdown in the ‘transcription’ of information. Health care professionals have varying levels of familiarity with developments in genetics. In the coming years, all of them will be expected to operate with an enormous amount of new information. Will there be sufficient professional development available to physicians everywhere to make appropriate use of all the new knowledge? I feel this is probably a smaller issue due to the fact that health care professionals are sufficiently intelligent and responsible enough to acquire the information they need to perform their duties. In addition, the availability of other health care professionals for second opinions mitigates the risk of serious errors affecting patient care.

FALLOUT

What can we expect as a result of the Translation Gap? To be sure, the effects will be far-reaching, and it is probably beyond my limited mental fortitude to foresee them all. However, a few notions occur to me.

            ** Folks with a solid knowledge base in genetics will be valuable in society. Genetic consulting – perhaps by paramedical staff – may become a widespread industry. Education and outreach programs will become an even larger and more significant part of the operation of hospitals, clinics and educational institutions.

            ** Many patients will fall into extremes in response to the new medicine.

            ** At one extreme, despair may become a significant issue. Already there are reports of patients committing suicide upon learning that their genetic makeup predicts future health concerns (even though their makeup most likely indicates a chance of future concerns rather than a guarantee). The new developments in medicine promise to be of tremendous use, but medicine as we know it today will be far from obsolete and the new developments will have limitations that may not be appreciated by lay people.

            ** At the other extreme, there may be a significant portion of society that doubts the ability of the new technology. This would be like the resistance to the knowledge that smoking dramatically increases the likelihood of lung cancer. In the early days, it was more common for people to dismiss the connection due to the fact that “increased likelihood” is not the same as “guarantee” and there have always been exceptions (folks who smoked into their 90s having never gotten lung cancer). By comparison, smoking is still being marginalized 50 years after the Surgeon General’s report. If you prefer a more modern example, look how resistant the general public is the human-caused climate change. This will be exacerbated by the fact that genetics will often indicate a “likelihood” (not a guarantee) of health issues, and there will be ample instances of patients who did not get the condition for which they were genetically predisposed.

            ** Doctor-patient relationships are strained as it becomes harder and harder for the patient to understand what their doctor is talking about.

            ** Money, money, money. There will be tons of it to be made. Biotech companies, particularly those involved in genetic/forensic equipment, should do great. Pharmaceuticals may well have to reinvent themselves. Also, there will be plenty of snake-oil type operations, peddling nonsense as elixir.

            ** There will be many new areas of ethics under consideration. Sure, sure, we already have a lot of ethics issues surrounding genetics, but the new knowledge will almost certainly open issues that either haven’t been thought of, or at the very least haven’t received as much attention as necessary.

** The Wild West? Like the internet of the 1990s, there may be a phase where new knowledge and technologies become available faster than we (as humans) will know how to sort it all out in proper ways. The world will not slow down, though, so there will be many pioneering cases of new knowledge setting precedents that affect generations to come, especially in the early days. It could take a few decades to iron out all the details in a meaningful way (and, of course, there will be wrinkles upon wrinkles in the fabric of health care as the process evolves).

KNOWLEDGE IS POWER

Perhaps I have misfired on some of the shrapnel that the Translation Gap will create. However, I do not doubt that genetics will cause a revolution in practical medicine, and I do not doubt that the average patient will have little idea what it all means. Interestingly, improvements to technology have allowed mankind this great leap forward, but how well we respond to it will largely depend on the social abilities of health care professionals and patients alike.

From my point of view, there are two appropriate responses. One is to learn some genetics. You have some time, but you definitely want in on this medical revolution and the sooner the better. This is definitely a case where knowledge for the sake of knowledge now will bear significant fruit later. The second appropriate response is to talk to people about it. Talk to everyone about it; your doctor, your friends who are doctors, your friends, your teachers, your families, your colleagues…everyone.  The two points are related, of course – If you have a solid understanding of genetics, you will be of use to your elderly uncle if he develops a condition which has a new treatment.

Really, the crisis I predict here should not actually happen, because it is absolutely no mystery that the revolution is coming. If my estimates above are correct, we probably have a decade or two to get everyone wise. That should be enough time. In the long run, the world will adapt to this knowledge. However, if this crisis occurs, it will cause a great deal of heartache (not to mention losses of money and progress) that should have been avoided.

Color me skeptical, though. I mentioned climate change earlier, which is another instance of a problem that we know is coming, that we understand very well, and that humankind is not addressing in a meaningful way. I fully expect this issue to hit us like we never saw it coming. It would be nice to be wrong on this one, but I doubt if I am.