The Protection of Genetic Information

The law pertaining to personal data has developed in Italy over a thirty-year span that took us from recognition of such data in the case law, in 1975, to its statutory protection, in 2003. This evolution would subsequently come to the point of specifically regulating the processing of genetic data as data revealing an individuals genetic makeup, thereby also revealing the biological future of individuals and their offspring: this information describes an individual at a core level where the deepest, most unchangeable traits are found and can therefore nurture what is nowadays referred to as genetic determinism, which reduces the person to a complex of genetic data and so ignores the whole layer of characteristics that make each of us unique. There is, then, a discriminatory risk inherent in the processing of genetic data, and equally clear are the psychological implications of such processing, so much so that the need has arisen to have rules in place aimed at regulating the biotechnologies and genetics in particular. These rules have given birth to the so-called fourth-generation rights, inclusive of the right to ones genetic identity and the right not to know ones genetics (although this is something that had been discussed earlier, too), and it is to a discussion of these rights that this essay is devoted.

Keywords: Personal data, genetic data, processing, privacy, person, discriminatory risk

Juri Monducci, La tutela dell’informazione genetica in "SALUTE E SOCIETÀ" 3/2010, pp 98-122, DOI: 10.3280/SES2010-003007