Being prepared for genetic advice

By  Peter Kavanagh, Catholic Register Special
  • October 26, 2007
{mosimage}Sometimes an observation leads to that rude “duh” of quick retort. But sometimes on a second or third thinking you realize that knee-jerk cynicism is simply insufficient, simplistic.

When I read the paper by University of Alberta ethicist Timothy Caulfield and his three co-authors arguing that we were ill prepared and worse equipped as a society for the possibility of personalized human genome assessments, I first concluded that it was a penetrating insight into the obvious. But on reflection, I suspect they are doing us all a service. We just aren’t listening and thinking hard enough about the questions.

The dilemma Caulfield poses is what happens when genetic information, in the form of a complete personal human genome, becomes so possible, so do-able that the pressure to make the data available is irresistible. This possibility had turned from science fiction fable to real probability when the American scientist J. Craig Venter surprised the world by announcing that he, in collaboration with the Hospital For Sick Children in Toronto, had produced a complete genome sequence of himself.

His announcement made clear that the dynamics of change in the field of genetics is literally mind-boggling. A complete personal genome is a relatively accurate map of your entire genetic sequence. It is clear that each of us has an individual map which could lead to consequences in diagnosis, treatment, decisions about the right genetic match for “optimum children” and real privacy issues dealing with insurance.

As seems always to be the case, the ability of science and technology to change our world at a rate that outstrips our social, political and moral means to cope is once again demonstrated. Nowhere is this as obvious as when we confront the biological sciences. As The Economist opined a few weeks ago, if the 20th century was the age of physics the 21st century is shaping up to be that of biology. And all that that might entail we have been warned about.

It is 75 years since the publication of Brave New World, that marvellous dystopian vision by Aldous Huxley. Brave New World is set in 2540 and it is a world of mood-altering drugs to control social behaviour, genetic engineering leading to different classes of human beings and a primacy on the individual fitting in, fulfilling the needs of society.

I have always thought it was a darker more possibly real vision of the future than George Orwell’s 1984. To compare the two books is to come to a harsh conclusion. As horrible and soul destroying as a totalitarian regime based on ubiquitous surveillance might be, the potential to destroy human nature — the very idea of what it means to be human — truly lies with those who would tinker unthinkingly with our biological foundation.

The critical word here is unthinkingly and that may well be what Caulfield is warning us about. There is clearly a lack of thinking about the social and moral consequences of decision making when it comes to health, medicine and biology. The controversy and ongoing debate over the introduction of the HPV vaccine is a classic example of how decision-making can be absorbed by finance, demographics, public-health delivery issues and epidemiology while never giving a thought to matters of possible moral qualms, parental-child relations or whether the degree of proclaimed urgency justified the speed of the decision. That each side seems befuddled by the other is evidence we have never sorted out the very underpinnings of the forces we choose to unleash.

The arguments over the HPV vaccine will seem like a sun shower compared to the thunderstorm of dispute and acrimony the imaginable future of genetic developments portends, let alone the unimaginable.

In 1958, Huxley wrote Brave New World Revisited, in which he reflected things had changed dramatically and with more speed than he had imagined or feared. The sad truth is that even he, the classic pessimist, would be proven wrong about the fear he felt.

Caulfield and his colleagues worry about the capacity of our medical systems, the state of our privacy, the potential for misuse. All valid concerns, ones that may well be left at the wayside in the excitement of the wondrous possibilities of genetic knowledge.

But the more worrisome and unstated outcome might be a further intensification of the notion that we are simply biology. This is a question far removed from matters of resource allocation and medical insurance systems — far removed indeed, but ultimately at the heart of the matter.

(Kavanagh is a senior producer for CBC Radio in Toronto.)

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