di Marinella de Grano*
Nel 2009 l’OMS, con la pubblicazione del Report “Donne e Salute“, riconosce il genere come uno dei fattori determinanti di salute, definendo la medicina di genere lo studio dell’influenza delle differenze biologiche (definite dal sesso ) e socio economiche e culturali (definite dal genere) sullo stato di salute e di malattia di ogni persona ed evidenziando come il dimenticare la specificità del genere in medicina potesse determinare conseguenze negative in termini di accesso ed appropriatezza delle cure.
In Italia si aprì un profondo dibattito fino a giungere a un’iniziativa all’avanguardia con l’adozione della Legge 11 gennaio 2018, n. 3, cui ha fatto seguito il Piano per l’applicazione e la diffusione della medicina di genere sul territorio nazionale ad opera del Ministero della Salute.
Benché, siamo stati il primo Paese in Europa a formalizzare l’introduzione del concetto di genere in medicina, per la sua applicazione e diffusione nel SERVIZIO SANITARIO NAZIONALE, restano ancora molti stereotipi e preconcetti che si manifestano in vari modi e che portano inevitabilmente a discriminazioni nel perseguimento del pieno diritto alla salute.
L’attenzione, ma soprattutto l’azione, sul tema della discriminazione nella tutela della donna nella medicina di genere, in Italia, sembra aver subito uno stop.
Sappiamo, infatti, che diversi studi hanno dimostrato che già nella prima fase diagnostica, laddove si raccolgono informazioni importanti sull’anamnesi della paziente, molti operatori tendono a indagare su possibili cause psico-sociali arrivando ad attribuire i sintomi a cause psicologiche o soggettive nelle pazienti donne; diverso approccio, invece, si ha con i pazienti maschi, laddove la richiesta di informazioni è guidata dall’esplorare aspetti fisiologici e legati alla sfera prettamente medica.
Inoltre, compare ancora forte come il dolore delle donne sia classificato, per di più, di origine “psicogena o emotiva”, in adesione a quegli stereotipi che vogliono la donna drammatizzare o enfatizzare o, ancora peggio, inventare il dolore.
Nella patologia ischemica, studi nazionali e internazionali hanno dimostrato sintomi diversi tra uomini e donne; ma la medicina, tutt’ora, chiama “atipici” i sintomi riferiti alle donne: benché il dolore toracico rappresenti il sintomo principale di malattia coronarica acuta comune a entrambi i sessi, le donne manifestano più frequentemente dolore alla schiena, irradiazione alla mandibola, nausea/vomito, dispnea, palpitazione e vertigini, affaticamento, inappetenza e sincope.
Quanto alla sperimentazione clinica, fino agli anni ’90, non era annoverata la presenza femminile e, ancora oggi, le donne sono rappresentate in percentuali minoritarie negli Studi Clinici di fase II e III, mentre nella fase I, tra i volontari sani, è molto più difficile arruolarle rispetto agli uomini.
La partecipazione ridotta o, meglio l’esclusione, delle donne negli studi clinici è stata ed è giustificata dalla difficoltà di interpretare i risultati a causa della variabilità ormonale o da motivazioni etiche legate alla possibile gravidanza durante la sperimentazione farmacologica. Tuttavia, studi recenti hanno dimostrato inconfutabilmente che le donne potrebbero richiedere dosaggi diversi di determinati farmaci rispetto agli uomini, a causa di variazioni nel metabolismo e nell’assorbimento dei medicinali e, che, le variazioni nei livelli ormonali influenzano significativamente la reazione a determinati trattamenti.
Questo nuovo livello di conoscenza e consapevolezza richiede, dunque, una maggiore sensibilizzazione di tutti gli attori sociali fondamentale per promuovere la cultura medico-scientifica del rispetto delle diversità di genere.
Le donne, è noto, si preoccupano della salute degli altri (figli, mariti, nonni) ma trascurano spesso la propria, come testimonia il fatto che risulta meno partecipazione attiva nel coinvolgimento della definizione degli obiettivi terapeutici, nella scelta delle terapie e nel monitoraggio dei sintomi.
Ad oggi, ho l’impressione che da parte della popolazione femminile ci sia stata una resa davanti all’ormai acclarata e mera considerazione delle differenze anatomiche superficiali tra uomini e donne, non soffermandoci abbastanza sulla modalità di raccolta dei dati genetici e demografici da parte di centri di ricerca e, quindi, sulla equilibrata rappresentanza di genere a garanzia del pieno diritto alla salute.
In tale contesto è, infatti, ormai chiaro il ruolo fondamentale svolto dalle nuove tecnologie e dall’Intelligenza Artificiale, in particolare.
La storica marginalizzazione femminile potrebbe avere una influenza dirompente nella ricerca clinica e non possiamo o dobbiamo permettere che le disuguaglianze basate sul genere si manifestino anche nell’IA applicata alla medicina con l’incorporazione di informazioni attualmente in uso che, non pare rilevino i pregiudizi legati al genere femminile. Fare alleanza con gli tutti gli operatori, politici e sanitari, affinché gli algoritmi di apprendimento automatico (machine learning ), sempre più utilizzati in ambito sanitario per coadiuvare i medici nelle decisioni riguardanti la diagnosi, la prognosi e la scelta di terapie appropriate, siano allenati a una valutazione attenta per verificare la presenza di bias. Altrimenti, il miglioramento atteso sarà limitato solo a un sottoinsieme di pazienti, probabilmente maschile, con la conseguenza di aumentare le diseguaglianze della tutela sanitaria.
Puntuali indicazioni legislative devono essere, quindi, promosse nella selezione delle caratteristiche di genere negli insiemi dei dati medici sottoposti a modellazione con IA con l’intento di mitigare i bias legati alla sotto-rappresentazione delle donne nella scienza medica.
In tale quadro si inserisce la primaria necessità di nuove iniziative per promuovere l’effettiva partecipazione della cittadinanza femminile nei processi innovativi anche attraverso la promozione di azioni per l’adozione di campagne di sensibilizzazione informative che scardinino i vecchi pregiudizi e che promuovano l’importanza del coinvolgimento attivo della donna nel mondo della ricerca e della sperimentazione, allo scopo di garantire che le questioni specifiche siano adeguatamente considerate nelle politiche sanitarie.
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