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Propensity to disease revealed by DNA must not be used to stigmatize, warn scientists

If there was a way of knowing precisely which diseases we were going to suffer from in the years to come, the people most interested in hearing the bad news – apart from ourselves – would be our employers and our insurers. The former wouldn’t dream of employing someone who might die of a heart attack at 40, and the latter would want to raise the premium on coverage. In recent years, many employers – mainly on the other side of the Atlantic – have refused to employ smokers or the obese because they are at greater risk of heart disease. What will happen now that science enables us to discover our predisposition to certain ailments? Should such information be at the disposal of employers? Can insurance companies refuse to insure those who have «bad» genes? Such were the issues addressed by the speakers on April 6 in a meeting at Athens University on the protection of genetic data, organized by the Data Protection Authority (APDP) and the National Bioethics Committee. Giorgos Maniatis, professor of General Biology at Patras University Medical School, explained that analysis of human DNA has shown that we have no more than 25,000 genes («there are plants with more genes») and that as much as 99.9 percent of our DNA is identical. What can be read of the other 0.1 percent contains the information about our propensity for certain diseases. While the ability to read our entire genetic data can help protect us from disease or even cure us (by gene therapy), help fight crime by tracing the genetic footprint of perpetrators, and determine the paternity of a child, on the other hand, it raises a series of ethical dilemmas to which answers have not yet been found. Could the disclosure of our genetic data lead to our being socially stigmatized or rejected by employers and insurance companies? Maniatis believes the danger has been exaggerated. «We are not our genes,» he told Kathimerini. «We cannot predict disease from genes. Genetic data is expressed in interaction with the environment. Only 5-10 percent of those who get cancer were born with a higher risk. Heart disease, diabetes, hypertension, psychoses and cancer are caused by interaction with the environment. Genetic information only reveals a predisposition to disease. Arterial pressure and smoking are often better predictors of illness.» Maniatis believes it is an oversimplification to name a gene for each disease. «What we call the ‘breast cancer gene,’ for instance, applies to only 5 percent of cases, and it is not even certain that those who have it will get the disease – they simply are at higher risk,» he explained. This is why Maniatis insists we should not fear that the disclosure of our genetic data will «strip us bare.» «On the contrary,» he said, «knowing about a higher genetic risk can lead to minimizing the environmental hazards so that the overall danger is below average. And it would be absurd for employers not to take on someone who was at a higher risk of a heart attack because if the worker knows about it, he or she would take steps to avoid it.» Genes are also a family affair and affect other people. Should third parties be informed? Maniatis cited the example of a woman with breast cancer who turned out to have a genetic predisposition to the disease but did not inform her sister, as advised by the doctor, and the sister subsequently got cancer. There must be protection from the unjust, incorrect and improper use of genetic data, argues Maniatis. He believes that anyone who requests access to genetic data must be able to furnish scientific proof as to why they require the information. At last Tuesday’s meeting, both National Bioethics Committee President Giorgos Koumantos and APDP President Dimitrios Gougourakis agreed on the need for the two bodies to cooperate on an overall directive on genetic data.