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The New Personal Code


by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

We are entering the age of personal genetic information, made clear by two recent stories.

• In England, a company called Sciona is offering tests for nine genes at the cost of about $250 that it says will allow the company to give customers "genetically tuned" advice on what they should and shouldn't eat and drink based on their genetic profile.

• The second story is about a service being increasingly offered by funeral homes across the U.S. through a company called DNA Analysis, Inc. that -- for $350 -- will store samples of blood and hair from deceased loved ones for future genetic testing of inherited diseases or other traits in families.

This may be a harbinger of things to come now that scientists have successfully mapped the human genome, but can we really expect personal genetic profiles to inform how we live our lives? And what ethical issues are raised when we seek out such genetic information about ourselves?

You don't always get what you pay for

Personal genetic profile customers may be disappointed in what it actually tells them. For all but a few genetic diseases, such as cystic fibrosis and Huntington's disease, genetic tests will provide only probabilistic information about health risks. So if people learn that they have a 10% greater risk than average for colon cancer, does that mean they should eat less red meat and more fiber? That's probably good health advice for just about everyone.

The influence of the environment on genes and genes on each other further complicate matters. For instance, exposure to the sun increases the likelihood of skin cancer for everyone, with or without genetic predisposition, and we may eventually find that a gene that may increase the risk for skin cancer may actually reduce the risk of other diseases.

And maybe more importantly, what we know today about our genes will pale in comparison to what we'll know in a few short years. Future information may not only make today's information moot, but could end up leading to just the opposite advice.

Be careful what you wish for

There's other considerations as well. We still don't have clear policies in the U.S. about who can access our personal genetic information, and what they can do with it. For instance, employers and insurance companies may be interested in knowing genetic information to determine how much individuals will cost to insure and what sorts of jobs we might be suitable for -- especially if they involve exposure to toxic substances or other hazards.

So the tissue samples from relatives that we pay to store so we can understand our genetic inheritance may actually be far more costly than the storage charges alone. And the impact may potentially affect everyone related to the tested individual. The same genetic information that may give us some sense of what foods are wise to avoid could be used for far different purposes by a range of third parties. One conclusion is that until some minimum protections are in place as a matter of public policy, the risk of all but the most useful genetic information may outweigh its benefits.

Where does all this lead us? The genetic revolution may eventually give us personal health profiles that will help us lead better and healthier lives. But today it is little more than a glimmer on the horizon. However far off, that future is certainly coming, and we better be ready for it.

Visit the
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.

"Ethics Matters" is a biweekly feature from the
Center for Bioethics and CNN Interactive.


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