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Elena Araneo

Indi Gregory's case

Updated: Nov 23

Indi was an eight-month-old child who was affected by D,L-2-hydroxyglutaric aciduria, a mitochondrial disease that targets multiple body apparatuses, that was discovered by the University of Bari “Aldo Moro” in 2013. The child was deemed incurable by the Queen’s Medical Centre of Nottingham, to whose intensive care unit she had been admitted. After a long and controversial court process, that first ended with the solution to keep Indri alive thanks to the support of artificial ventilation (which prices are very high), and then the EWHC declared the decision to turn off her life support since the doctors have declared the incurability of her illness and that, given the pain caused by the palliative treatments she was receiving, the decision was taken in her best interest. This case echoes other similar dramatic cases, like Charlie Gard and Alfie Evans, also widely covered by the press. Indi Gregory’s health issue was a private business that rapidly was transformed into a political concern due to the Italian Government’s decision to grant Italian citizenship to the minor: a procedure declared on Article 9 Comma 2 of the Italian Statute on Citizenship of 1992, according to which citizenship may be granted, through a Presidential Decree, as an “exceptional interest for the Italian State”. The procedure was meant to constitute a means to bring the patient to the Bambino Gesù Hospital, in Rome. This decision was meant to provide the best medical assistance to Indi, even though there was no possibility of healing, rather than interrupting her medical support. An idea that many important political figures share, like Eugenia Roccella, Minister for Family, Birth and Equal Opportunities, Giorgia Meloni, Prime Minister of Italy, and the Italian senator, Matteo Salvini. Despite the Italian Government’s action, the EWHC declared that there is nothing to suggest that IG’s prognosis would be beneficially altered by the Italian hospital’s treatment [1]: that declares Indi’s death (in fact she could only survive a few days without the artificial ventilation’s support).


The debate focuses on the reason why Italy got involved and also it questions the moral and ethical validity of the United Kingdom’s deliberation. Riccardo Magi, an Italian politician, affirms that the granting of citizenship to Indi was not a humanitarian act, therefore it was a political act that would guarantee nothing more than what the Queen’s Medical Centre of Nottingham was already doing. Instead, others argue the paternalistic understanding that Italy has adopted: it seems to be the only Community reputed to be suitable to attend to her suffering. On the other hand, Simone Pillon, an Italian ex-senator, declares that the English juridical institution completely lost the common view on the “problem” and also, they didn’t consider at all Indi’s parents will: according to Pillon, if it is not against their children’s life, their will must be acknowledged. According to Martin Heidegger, “Care” is the fundamental structure of human existence, in fact, caring means taking care that the other stands in his essence, in his being. Heidegger's point of view on “Care” allows us to fully understand its ethical value. The concept of cure is based on a practical end (the healing of the sick), but more specifically, it has an important role within humankind: we are not alone in this world, we must pay attention to others; we, as humans, have the role to participate in each other suffering (like the Latin poet, Terence, said: homo sum, humani nihil a me alienum puto [2]). That is something that was negated to Indi Gregory. As his father said, the transformation of a private health issue into a political preoccupation has taken out the dignity of her daughter’s death. 

Can we evaluate Indi’s death as a collective defeat if we are aware of the precarious condition in which medical research finds itself and also if we are conscious of the political appropriation of a private debate?


Elena


[2] Heautontimorùmenos, Terence 


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