Genetic exclusion is not fiction

2008/06/09 Arakistain Aizpiri, Lorea - Elhuyar Zientziaren Komunikazioa

• Medikuntza

The basis for combating genetic discrimination has been laid.

NHGRI

The U.S. Senate has therefore taken steps to combat genetic discrimination. The Senate has unanimously passed a bill that prohibits discrimination based on genetic information. At the entry into force of this law, only the patient and the doctor will have the right to know the information provided by the genetic study. Therefore, insurers will not be able to request in advance a study showing a trend towards disease development. And companies cannot reward or harm anyone based on genetic information.

They could be assumed by companies and insurance. for fear of measures, people could decide not to take the exam. (NHGRI)

Fear of results

Scientists believe that genetic studies are important, but for oneself, no one else should know them. They can show probabilities to develop certain types of cancer. These studies show that a person is more likely to develop colon, prostate, and breast cancer. But these data are not at all decisive. Its appearance depends mainly on environmental factors.

However, there are less frequent diseases but with a very safe forecast: Duchenn muscular dystrophy and Huntington's evil, for example; the appearance in the DNA of a genetic variant that produces it, there is no doubt of its appearance.

Therefore, the importance of genetic study is highlighted. But that analysis has generated social fear, fear that this information will be used against oneself. In fact, in the US, so far there were only two ways to do the exam: through insurance and leaving the information at hand or paying each of their pockets. What could be paid had no problem, but the rest: with this information, out of fear of the measures that companies and insurance could take, people could not do the exam.

And the advances that can be made in medicine are inhospitable, if it hurts people more than good and, in this case, society excludes them.

Here, in current studies, blood tests, etc. are confidential.

Here what?

Here, at least, and with the existing health system, there is no cause for concern. Systematic genetic studies are not yet conducted. When a family history has appeared, that is, when a disease that can be genetically inherited from a relative has been detected, it is analyzed if the children have these variants. This study is carried out by the public health system. Therefore, this information is only known by your doctor and the patient himself. In no case is it made public and companies and insurance companies have no right to know such information.

But suppose the day comes when genetic testing becomes normal and begins to take place on regular medical examinations. That is, in these studies carried out in the workplaces themselves we analyze our possibilities of disease development. So what? Because things should change a lot so that our privacy is in danger. In fact, in current studies, blood tests, etc. are confidential, are not known to the company, so would not have knowledge of the results of genetic studies.

Although discrimination on the basis of sex, race, etc. are also illegal, are frequent. Genetic discrimination, on the other hand, is easier to avoid protecting privacy, since it is not so evident. But is it fair that in DNA we have found a genetic variant that can cause a disease and have had to be ashamed and hide?

Published in 7K.