How to protect yourself from genetic discrimination

Recently, genetics has been developing, to put it mildly, at a rapid pace. Since the decoding of the first human genome in 2003, the original DNA sequencing procedure has undergone significant improvements, which has ensured its acceleration and reduction in price by dozens of times. The result of this was the emergence of a variety of available genetic tests, the prospects of practical use of which, however, are overshadowed by the lack of adequate legislation that would ensure reliable protection of confidential genetic information. Unfortunately, the legislative bodies are catastrophically not keeping up with the development of the field of genetic research.

In this regard, specialists of the American Association for the Study of Heart Diseases have compiled a list of recommendations published in the Circulation journal published by the association. In addition to the recommendations concerning heart and circulatory diseases, the publication contains the provisions of the general plan listed below.

The need to stop issuing patents for work with certain genesAt the present stage, genome sequencing involves observation, not intervention, so genes should not be patented.

The authors mention a controversial case, currently being considered by the US Supreme Court, in which the company patented two genes – BRCA1 and BRCA2 – associated with breast and ovarian cancer. As a result, the company has a monopoly on testing related to the identification of these genes. Some experts believe that this limits the opportunities of women who want to undergo appropriate testing.

Ensuring federal control over genetic testingAll genetic tests must meet the quality criteria.

In the United States, the ideal candidate for the control function is the Food and Drug Administration (FDA), which has the legal authority, the ability to conduct scientific expertise and experience in regulating genetic testing.

Expansion of anti-discrimination legislationInsurance companies do not provide insurance against discrimination for genetic reasons.

To maximize the benefits of genetic testing, federal laws must ensure that it is possible to pass such testing without financial or any other losses.

The law on non-discrimination on the basis of genetic information, issued in 2008, prohibits such discrimination by insurance companies and employers, but allows for the possibility of insurance companies refusing to provide services to people diagnosed with a genetic disease, for example, congenital heart disease.

The provisions of the law on the availability of medical care, which is scheduled to enter into force in 2014, will require the creation of insurance schemes that protect all people interested in this, regardless of their genetic profile and health status.

The publication also contains the following recommendations:

• conducting genetic testing and counseling in specialized centers;
• creation of compensation schemes for screening family members of patients with genetic diseases;
• increased funding for clinical research in the field of genetics;
• increasing the volume of studying the relationship between genetic factors and the risk of heart and blood vessel diseases;
• educating healthcare workers and patients about genetics;
• in-depth study of genetically mediated reactions to drugs (pharmacogenomics) with the unanimous consent of specialists to make changes to the recommendations for prescribing medicines.

The new proposals are the result of the work of the commission, which included geneticists, practitioners, nurses, genetic consultants and other medical specialists, who for two years discussed various issues related to genetic research and the practical application of their results.

According to the chairman of the commission, Dr. Euan A. Ashley, who is the director of the Center for the Study of Hereditary Diseases of the Cardiovascular System at Stanford University, patients should be protected in the upcoming new medical era. Currently, the speed of development of genetics is simply amazing. It is quite possible that in the foreseeable future, a complete decoding of his genome will be entered into the medical record of each patient, and the doctor will only have to look at it before prescribing the necessary drug.

The article Genetics and Cardiovascular Disease: A Policy Statement From the American Heart Association is published in the preliminary on-line version of the journal Circulation.

Evgeniya Ryabtseva
Portal "Eternal youth" http://vechnayamolodost.ru according to Medical News Today:
Recommending Safeguards Against Misuse Of Genetic Data.

04.06.2012