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We'll Have to Use Data Wisely

Sunday, January 2, 2005; Page B03

"You know more than you think you do," Benjamin Spock encouraged parents in the first line of "Dr. Spock's Baby and Child Care," more than half a century ago. Nowadays, when we think about all the information available to us at the tap of a finger and the flash of a screen, it sometimes seems that we know more than we ever thought we'd know about our children, ourselves, our health. The essential question is what to do with all that knowledge. By 2020, we will know much more, and the question of how to use that vastly expanded knowledge to make intelligent choices will be our health imperative.

We already know an astonishing amount, at times more than we really can handle: Ask any parent who has had to make an agonizing decision about a fetus with a genetic problem, or any adult who has had to decide whether to be tested for Huntington's disease.

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Soon we'll understand much more, about a fetus, a baby, a child, an adult, about genetic susceptibility and risk, about predicting who might get heart disease, mental illness and certain types of cancer. You won't just say in a general way, oh yes, that runs in my family -- you'll be able to know specifically what runs, so to speak, in your veins. And the health challenge to us, as individuals, and as a society, will be what to do with this information, how to use it well and wisely at every level.

"The whole world is going to see how cardiovascular disease, obesity-related disease, mental illness, how these major causes of death and morbidity arise in utero or in childhood, how they're multi-generational, and the challenge is how to interrupt these processes so people can live long and healthy lives," says Matthew W. Gillman, associate professor of ambulatory care and prevention at Harvard Medical School, whose research focuses on long-lasting health effects of early human development.

Most of the great advances in human health, he points out, are connected to public health improvement, to greater public hygiene or safety or greater understanding applied on a population-wide basis, to changes we make in our society or our environment that affect everyone. Our job will be to look for ways to use our increased information to improve the health of the population, as well as the health care of the individual.

If we do this right, we'll pick our questions carefully, bearing in mind that a screening test is only valuable if a reasonable intervention is available. We're already doing it in certain areas, guided by family history: Hey, you have a high risk of cardiovascular disease, so modify your lifestyle and your diet in ways that will really change your odds! And you, over there, you have a higher-than-average chance of developing a hidden cancer, so you need to get yourself checked more often than most people.

Well, imagine those pieces of advice to the nth degree, a custom-made set of lifestyle advisories so you don't end up like poor Uncle Al, or so that your sweet 1-year-old, who happens to share his genetic susceptibilities, doesn't take any baby steps in that direction. Or imagine a carefully tailored set of pharmaceutical recommendations about which drugs are likely to work well for you and which may be a little dangerous, all based on your genetic makeup.

But doing this right will mean thinking not just about what will work for you, but about how this understanding of susceptibility, environment and prevention should help us shape our medical system and our social policy. If we do this right, it ought to mean sense and safety; if we push too hard and too egotistically, it could mean, unfortunately, a custom-made set of predictions, anxieties and paranoid, late-night hypochondrias, or the kind of anxious hovering over a child that leads to limited expectations and self-fulfilling prophecies.

Doing it right will mean using screening tests intelligently to pinpoint problems where early detection and prevention change the odds. Doing it right will mean learning to assimilate additional information about individual risk, and yet not letting that information limit our horizons. And above all, doing it right will mean thinking not only individually -- as privileged consumers of health care -- but for everyone, so that this information is available to all, so that we use what we learn about risk and prevention to make the world a little safer, improve our health care delivery as well as our health, and meet the challenge of staying healthy in 2020.

By Perri Klass, associate professor of pediatrics at Boston University School of Medicine and co-author of "Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In" (Ballantine).


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