LIBRI DI PATRIZIA BORSELLINO

Il traffico d’organi è un fenomeno dilagante, con un giro d’affari di un miliardo e mezzo di dollari. Alla rete criminale che sfrutta le sacche di povertà sparse nel mondo si stanno affiancando oggi nuove realtà problematiche: l’Iran ha autorizzato la vendita di Stato dei reni; l’America si sta aprendo al mercato; la Cina persevera nell’impiego degli organi dei condannati a morte. Su tutt’altra linea l’Europa, e in particolare l’Italia, che nel 2016 ha inserito nel codice penale il reato di traffico d’organi, nel tentativo di arginare un fenomeno mostruoso.

This current issue of Salute e Società calls attention to the pressing need for a cross-disciplinary discussion among physicians, philosophers, and jurists in tackling questions such as personal freedom, the right to self-determination, the protection of personal data, the right not to know (especially in genetics), the spread of so-called defensive medicine, and the model we should adopt in enabling patients and physicians to share information and communicate in a way that supports the decision-making process.

The paper frames the issue from the philosophy of law’s viewpoint to determine the current “state of health” of informed consent starting from some critical areas (like the physician-patient relationship, illnesses with poor prognosis and the endof life medical care, genetics, clinical research and practice) and from its legal sources (like judicial decisions). The author’s claim is that informed consent does not need to be weakened in this historical period in order to strenghten solidarity and trust to achieve common goals for all human beings. Instead, she aims at proving that trust and solidarity should be placed in a participatory and cooperative scenario which should be fed by the respect, at the highest levels, of individual self-determination, and therefore of informed consent.

The paper frames the issue from the philosophy of law’s viewpoint to determine the current "state of health" of informed consent starting from some critical areas (like the physician-patient relationship, illnesses with poor prognosis and the endof life medical care, genetics, clinical research and practice) and from its legal sources (like judicial decisions). The author’s claim is that informed consent does not need to be weakened in this historical period in order to strenghten solidarity and trust to achieve common goals for all human beings. Instead, she aims at proving that trust and solidarity should be placed in a participatory and cooperative scenario which should be fed by the respect, at the highest levels, of individual self-determination, and therefore of informed consent.

What are the premises that genetics is capable of maintaining? What threats deriving against which defences need to be constructed, making use of legal tools, among other things? By clarifying the practical fallout deriving from the knowledge acquired in the field of genetics in recent years, in particular the human genome mapping project, the author highlights how genetics offers authority neither to postulate that all diseases may be vanquished within a handful of years, nor to fear that there is a concrete risk of living in a society of genetically manipulated human beings. There is rather a risk deriving from the availability of a large amount of genetic information, related to the diffusion of increasingly accessible tests that ascertain an individual’s genetic predisposition to develop a given illness or certain behavioural features. Discriminatory policies have in fact already been put into place in some cases especially in the areas of insurance and employment on the weak foundations of the statistical probabilities of genetic profiles calculated on the basis of predictive tests. Moreover, a new lease of life has been acquired by the deterministic conception already used towards the end of the nineteenth century by the Positive Criminal School to justify the preventive restriction of personal freedom. After stressing that every intervention of lawmaking with regard to genetic information implies the need to make critical value judgements, the author highlights the fact and adds her own positive appraisal that the interventions of lawmaking in this field on both national and international level for which information is available have identified individual freedom as the priority value deserving of suitable legal safeguards, thus supporting the pluralist ethical perspective that has no room for any form of subordination of individuals and their choices to any claims of supposed moral superiority, not even of a social moral centred on the public weal and social defence.

Informazione, consenso e riservatezza nella relazione medico-paziente. Dalla deontologia alla l. 675/96 (di Patrizia Borsellino) - ASBTRACT: "Information", "consent" and "privacy" are three key notions in coming to grips with any analysis of the transformation that has been affecting the relationship between the doctor and his patient for several years, in Italy as elsewhere, and for evaluating the impact that can be exerted on it by the normative tools entrusted with disciplining a field that has traditionally been the preserve of medical deontology and has only recently come within the scope of legal jurisdiction. After calling attention to the liberal model of the doctor-patient relationship, which has been increasingly successful, to the detriment of the paternalistic model, the author focuses on the norms designed to guarantee the privacy of information about an individual's state of health as enumerated in Law N° 675/96 and the subsequent legislative decrees issued to transpose Law N° 676/96. Her analysis of these provisions, made in parallel with an examination of the provisions covering the issues of information, consent and privacy contained in the code of medical deontology passed in October 1998, leads to her raising a series of critical points and voicing the theory that the pieces of legislation in question constitute an example that legislators would do well to avoid repeating in future if they want to avoid providing further arguments to support the theory that there is preferably no room for law, and especially for legislation, in questions concerning the human body and health.