The Written Word
for April 9, 2000

I wonder if the full significance of the Gnome project is fully appreciated? I know that in that tiresome phrase it’s boggled my mind but then I have the least scientific mind in the universe. But the thought that I can be mapped and all my ailments past, present and especially future can be mapped is too much for me to get my mind around and I’ve had the great opportunity of interviewing Dr Michael Smith, UBC’s own Nobel Laureate, several times on the subject.

I’d perhaps past the time when I should worry about these things but how about being able to know just what your medical predispositions are? Dr Smith gives the example of Jack Webster who smoked three packs of cigarettes a day for nearly a lifetime and lived to 81 yet others get lung cancer with much less smoking and far earlier. Will gene mapping solve that paradox? The answer is almost certainly yes. But of course it’s much more than that – at, say, 35 you could know what sort of diseases you will be prone to and even what you will likely die of and when. What may even be more chilling is that your employer, the government and your insurance company may be able to know the same things.

Let’s take insurance for example – you buy both disability and life insurance to offset the disasters what come with early illness or death. This insurance is sold based upon probabilities. At 35, say, your premium will be based upon a number of factors, including lifestyle and what your parents and siblings died of and when, your general physical health and so on – and from this package of information the insurance company makes its underwriting decisions and either insures you or it doesn’t. In fact I suppose that the vast majority of us carry our disability and life insurance through group plans where we work and the ability of the insurer to decline is lessened by the fact that the group is so large that many of our personal peculiarities are often overlooked indeed not even asked for.

But what happens when insurance companies have the ability to know, damned near for certain, how long we’re going to live and with much greater certainty than now when we might have that disabling stroke or heart attack?

Isn’t this going to mean that many people now insurable because their apparent weaknesses are poorly predictable, but with a gene map would be very predictable, will become uninsurable? What company, given a gene map of you showing that largely because of heredity you are in grave danger of a stroke at 50, is going to give you disability insurance until you retire?

And if insurance companies, now only insure the better risks – admittedly at much lower cost to the insured person – who picks up the tab for the uninsured people who are suddenly unemployable and but for the gene chart would be collecting disability insurance?

And this, of course, raises the bigger question of privacy.

Under what circumstances must you disclose your gene chart? Must you submit, as a condition of employment … or as a condition of insurance … or perhaps a pilot’s license or even a driver’s license to such a test?

And who owns the results of this test? Suppose you want this done on a physician’s advice … is this subpoenable in a trial, for example? Does it go with the rest of your medical records which already you might feel a little possessive of, and for good reason?

And of course there is the great question – do you want to know at 35 that, for reasons beyond your control, you’re likely a goner at 50? Some would say yes, I suppose, so that they could plan for their families. Many more of us I suspect, would rather stay in our somewhat troubled but understandable state of denial.

This modern age of computers and immense medical change have left us with many social issues, indeed ethical issues to grapple with. Unhappily, for Canadians at least, it comes at a time when government is especially remote from their control and the bureaucratic natural appetite for whatever information they can get on individuals seems insatiable.