Do We Really Understand?

Okay, call me a cynic, or maybe even a curmudgeon, but I sometimes wonder just how much we understand about Information –and by extension, it’s relationship to Knowledge.

Information can be construed as the answer to a question or, seen from a different perspective, as that which has the potential to resolve uncertainty. Numbers, for example, are not information unless they pertain to something. And when we think of information in the form of data, it doesn’t necessarily require someone to receive it, but can stand alone, unwatched and unprocessed until summoned. Knowledge on the other hand can be thought of as the reception, collation, and subsequent processing of that data –requested, in other words. Whether that which stands in isolation, unprocessed and unused constitutes Knowledge is an interesting, but tricky issue –likely of the same ilk as ‘If a tree falls in the woods with no one around to hear it, does it still make a noise?’ that we all puzzled over in Philosophy 101 in University. Because data –information- has the potential to answer a question, does that automatically qualify it as knowledge even if there is no question? Even if it might not resolve any uncertainty?

I raise these issues not to transition into a discussion of information theory, but to ask how much we are furthered by information about issues that are incompletely understood –known?- even by experts in the field. I’m referring, of course, to our own DNA.

Scientists are accumulating more and more data about genes and their codes and loci on specific chromosomes. They are beginning to link particular code changes in these genes to specific conditions, and the process is just beginning. Progress seems to increase logarithmically. The promise of this information is enormous in terms of diagnosis and perhaps eventually, treatment.

I do wonder, however, whether it is valuable or premature to offer personalized genotypes as a commercial venture to anyone who asks for them. Clearly, there are situations when the information would be helpful when questions are asked of it: risks of a genetically-carried disease, hereditary lineage, or even paternity, as examples. But do we really know more about ourselves because some company has mapped our chromosomes? Without a question being posed to which the genetic sequences are the answer, is what is received useful, or pap? At this stage of our investigation of the genetic code, is an undirected map of base-pairs on a chromosome anything other than simply that: a small scale map of largely unnamed streets of a mysterious city that happens to have the label of the requester on it? A hieroglyph?

Undoubtedly, as the data accumulate, this mapping will progress to the stage where it becomes an essential guide to a city we wish –or need- to explore. And perhaps the store of information acquired will allow retrospective analysis of things whose importance we have yet to understand. Answer questions we don’t yet have –or at least can’t yet formulate in a way that could be solved.

In the meantime, however, I worry about that very personal and private information being made available against our wishes and perhaps to our detriment. Insurance companies, for example, employers –or maybe even an untrammeled government worried about threats of terrorism or contagion may request, or perhaps legislate that the genetic information be provided –especially if it has already been obtained. Unfortunately, at least at the time of this writing, there is no protection in Canada against discrimination based on genetics. There is, however, some legislation under review (Bill S-201) that addresses this. One hopes that its adoption will be soon, but it is a concern that certainly needs resolution before widespread adoption of personalized DNA should be considered. Once Pandora’s box has been opened, it might be too late, so we must think long and hard about what we decide.

Well considered safeguards are essential in advance -both for governments as well as for industry that may be tempted to oversell the potential. I stand with Hamlet in this: one may smile, and smile, and be a villain.


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