https://doi.org/10.4081/mem.2009.231

La consulenza genetica in Italia: problemi, regole di consenso informato, trattamento dei dati genetici e privacy

V. 58 N. 6 (2009)
Pubblicato: dicembre 30, 2009
Consulenza genetica, privacy, consenso informato, biodiritto, dati genetici / Genetic advice, informed consent, biolaw, genetic data
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Autori

Marina Casini
marina.casini@rm.unicatt.it
Ricercatore, Istituto di Bioetica, Facoltà di Medicina e Chirurgia "A. Gemelli", Università Cattolica del Sacro Cuore, Roma, Italy.
Claudio Sartea
Ricercatore di Filosofia del Diritto, Facoltà di Giurisprudenza, Università di Roma "Tor Vergata", Roma, Italy.
Il contributo presenta una sintetica disamina di alcune delle questioni più rilevanti nell'ambito della consulenza genetica, dell'informazione e del consenso, della tutela della privacy in ordine al trattamento dei dati genetici, alle loro modalità di raccolta e conservazione degli stessi nonchè in ordine alle loro modalità di comunicazione e diffusione. Si tratta sicuramente di uno degli ambiti di studio più complessi e densi. Esso nasce, come osservano gli Autori, dalla necessità di armonizzare le grandi promesse della ricerca genetica con l'esigenza di non ledere i diritti fondamentali della persona. Tale esigenza è particolarmente intensa poichè un uso inappropriato dei dati genetici, la loro incontrollabile divulgazione, o un accesso indebito da parte di terzi, possono danneggiare gravemente - sia sotto il profilo professionale, sia nella vita di relazione - il soggetto da cui provengono le informazioni. L'argomento viene trattato esaminando fonti normative e documenti attinenti soprattutto all'ordinamento giuridico italiano, ma non mancano riferimenti a normative comunitarie e internazionali.
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The contribution offers a synthetic examination of some of the most remarkable questions within genetic advice, information and consent, privacy protection for genetic data processing, formalities of collection and maintenance as well as for formalities of communication and diffusion of data. It is of course one of the more complex and dense circles of study. As the Authors observes - it derives from the necessity to harmonize the great promises of genetic research with the demand of the respect of human rights. Such demand is particularly intense since an inadequate use of genetic data, their uncontrollable spreading or an undue access to data from a third party, may seriously damage - both under the professional profile, and within the relational life - the subject from which information originate. The matter is dealt examining normative sources and documents connected above all to the Italian legal system, but there are references to community and international commumnity.

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Come citare

Casini, M., & Sartea, C. (2009). La consulenza genetica in Italia: problemi, regole di consenso informato, trattamento dei dati genetici e privacy. Medicina E Morale, 58(6). https://doi.org/10.4081/mem.2009.231

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