Free access to genetic testing - guaranteeing or threatening the right to privacy?

AutorTomasz Sroka
Páginas137-148

Page 139

1. Introduction

On websites, both in Poland and in other European countries, one can find a lot of offers of genetic testing services directly, that is without the assistance of a physician (direct-to-consumer genetic testing). These tests are commercial in nature and can even be performed in laboratories out-side the European continent, after sending a sample of genetic material by mail. The development of the market for commercial genetic testing (direct-to-consumer genetic testing) is also connected to their placing among the Treaty freedoms, in particular freedom of movement of goods and ser-vices1. Unfortunately, most European countries don’t have legislation that was created specifically to regulate direct-to-consumer genetic tests2.

The range of genetic tests available direct-to consumer is very broad, from tests for confirmation or refutation of paternity or maternity, through tests for single-gene disorders, to tests for predisposition to diseases3.

Page 140

Therefore, the scope of information which can be acquired form genetic tests is also very broad.

It is worth mentioning that there are two types of genetic tests per-formed commercially. First, there are the do-it-yourself kits with which the person concerned samples genetic material and conducts its analysis by himself using a special kit sent by the service provider. The test results are obtained immediately and directly by the person concerned. Secondly, there are the so-called home sampling tests with which the person concerned samples genetic material by himself, but the genetic material for testing is sent to the laboratory. The laboratory, after testing, sends the results of the analysis of the samples submitted back to the person concerned4.

Both types of genetic tests give the individual an opportunity to obtain a wide range of information not only on his genes, but also on the genes of other people (because of their heredity) without leaving home, and some-times without the need to provide a sample of genetic material to an appropriate laboratory. The nature of the information and closeness of the relationship with the sphere of human privacy requires an analysis of how much the access to commercial genetic testing is a guarantee, and how much a threat to the right to privacy of the individual.

2. Genetic tests and protection of private life

Free access to commercial genetic testing is not limited to the ability of an individual to exercise the right to know his genetic identity and information directly related to one’s genes. Genetic tests are in fact important for other aspects of private life, especially health and existence of potential diseases, as well as decisions concerning therapeutic and prophylactic actions. Genetic tests provide for a possibility to better understanding one-self, and above all, one’s state of health and the likelihood of developing e.g. cancer, Alzheimer’s disease or a genetic disease. The information obtained may allow, among others, the selection of adequate treatment (e.g. information about drug responses) and making informed decisions about prevention, e.g. in the selection of diet reducing the risk of diseases, thus allowing even more conscious shaping of one’s private life5.

Page 141

Under the European Convention on Human Rights the protection of private life does not only encompass the right to be left to oneself, but also the right to obtain information about oneself. It seems that part of such a right is the possibility of obtaining the information resulting from genetic testing6.

Such statement arises from the interpretation of the European Convention on Human Rights in the context of the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Convention on Human Rights and Biomedicine), in particular Article 16 of the Additional Protocol on Genetic Testing for Health Purposes7. Since is the right to know any information obtained from genetic tests is a component of the protection of private life, then the right of an individual to carry out relevant tests to obtain genetic information is even more a part of such protection.

Moreover, in its case law the European Court of Human Rights stressed the importance of access to genetic testing as an instrument for the guarantee under Article 8 of the European Convention on Human Rights8. In the case of R. R. against Poland, the Court noted that access to prenatal genetic testing in a timely manner as a guarantee for genetic medical services, allowing to determine the health state of the fetus9. Thus, access to genetic tests - in some cases - may be an instrument to ensure protection for the right to privacy under Article 8 of the European Convention on Human Rights.

Page 142

Consequently, it can be concluded that the possibility of using commercial genetic testing is for the individual a way to guarantee the protection of private life, because they allow a greater understanding of information about oneself, and thus more conscious shaping of one’s private life. People can be proactive in making their own health care decisions10and tests could allow individuals to take greater responsibility for safeguarding their own health11.

3. Direct-to-consumer genetic tests and threats to protection of private life

However, free access to genetic tests is also associated with a risk to the protection of privacy of the individual. The literature emphasizes the fact that a large group of genetic tests is of questionable (disputed) quality. This is due to the fact that many of them are not pre-verified in clinical trials12. Consequently, their impact on the private lives of individuals can be negative, because unfavorable results may lead to deterioration in the health of a patient, particularly mental, and groundless treatment or change style life. The right to information on the private sphere of a person must therefore be realized with respect to the need to protect the person from wrong genetic information.

Guarantees related to the protection of human rights, in particular the right to protect private life, impose a positive obligation to protect individuals from the dangers mentioned above on the state, in particular at the level of legislation. For this reason, both the European regulations and literature emphasize that genetic tests should be carried out only after meeting certain requirements relating to the principles of informing the person conducting the genetic tests. According to Art. 8 of the Additional Protocol on Genetic Testing for Health Purposes to the Convention on Human Rights and Biomedicine, a person undergoing genetic testing should be previously informed of the purpose and nature of the test and the expected results13.

Page 143

This regulation indicates that the European legislator recognizes the need to ensure that appropriate information on the nature of the test, the quality and the expected results are communicated to the person concerned before carrying it out. However, the...

Para continuar leyendo

Solicita tu prueba

VLEX utiliza cookies de inicio de sesión para aportarte una mejor experiencia de navegación. Si haces click en 'Aceptar' o continúas navegando por esta web consideramos que aceptas nuestra política de cookies. ACEPTAR