The international and national legal sources provide a protection on genetic information of individuals, on the ground of the legislation concerning the personal data, especially in Europe through the Directive 95/46/EC. The Directive, as well as the international legal instruments approved by the Council od Europe and by UNESCO, uses an individualistic approach to ensure the control of the personal genetic information, through the consent or the anonymisation. However this scheme does not grant the solution of all problems concerning the genetic information, because of the special status of this kind of data. Furthermore, the individualistic approach prevents the balance between the will of the individual and the other fundamental interests protected by the legal system, such as the rights of other individuals (in particular the persons owning the same genetic information), the solidarity and the freedom of research. Therefore, a protection of genetic information should be achieved, alongside with future and eventual legislative interventions, also trough a better equilibrium between right to consent and the other interests, as well as by means some alternative legal techniques.
Consent to the Use of Genetic Information: Between Respect of Privacy and Protection of Other Fundamental Interests
CIPPITANI, Roberto
2014
Abstract
The international and national legal sources provide a protection on genetic information of individuals, on the ground of the legislation concerning the personal data, especially in Europe through the Directive 95/46/EC. The Directive, as well as the international legal instruments approved by the Council od Europe and by UNESCO, uses an individualistic approach to ensure the control of the personal genetic information, through the consent or the anonymisation. However this scheme does not grant the solution of all problems concerning the genetic information, because of the special status of this kind of data. Furthermore, the individualistic approach prevents the balance between the will of the individual and the other fundamental interests protected by the legal system, such as the rights of other individuals (in particular the persons owning the same genetic information), the solidarity and the freedom of research. Therefore, a protection of genetic information should be achieved, alongside with future and eventual legislative interventions, also trough a better equilibrium between right to consent and the other interests, as well as by means some alternative legal techniques.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
