Prevention of irreversible brain damage in newborns, a human right.

 Since the 1960s, my scientific activity has focused on the diagnosis and treatment of metabolic diseases, rare pathologies which, in some cases, cause irreversible brain damage. "Irreversible" is the word that should trigger all preventive efforts and ensure widespread screening. Its prevention implies early diagnosis and treatment. The fundamental objective was to detect avoidable hereditary diseases in newborns, which generally lead to irreversible mental retardation. In a short time, accompanied by the "luck of the bold", we detected a first case of phenylketonuria and the pilot plan was set up, which led to its successive implementation throughout Spain and participation in specialised international meetings was initiated, as well as biochemical and genetic research, to contribute to scientific knowledge of such an important aspect of preventive medicine.

As with any social, environmental or clinical phenomenon, it is necessary to apply treatment in time before the alteration that is to be avoided occurs, particularly when irreversible situations are involved. On several occasions I have referred to the need to act in a timely manner in order to stop the process at stages prior to the point of no return (ethics of time).

Every day I feel more and more strongly, and I try to express it in this way, that the search for, dissemination and application of knowledge is the most beautiful task offered to man's terrible perplexity, astonishment, doubt and fear. I remember that a few months after finishing my degree in Pharmacy, when I was starting to work in Prof. Santos Ruiz's laboratory, I visited an institution for the mentally handicapped.  There, on that day, many things in my life took root. Other things were erased by the force of that memory. And the feeling that it is necessary to contribute to alleviating and making the life of man, the only being aware of the great gift of life, more bearable, became more intense and urgent.

In 2023, on the 75th anniversary of the Universal Declaration of Human Rights, I proposed to the United Nations, through its High Commissioner for Human Rights, Mr. Volker Turk, the recognition as a human right of the prevention of diseases that cause irreversible neurological damage and requested their help in the processing of this new human right. We then asked all governments, institutions and scientific societies to support the proposal to declare as a human right the prevention through neonatal screening of pathologies in which irreversible damage can be avoided through early treatment.

It is now necessary to promote a conscious citizenship that is not a spectator of what is happening, but an actor for the progressive and urgent elimination of risks that affect humanity without further remedy. At last, human beings are gradually recognising that they are equal in dignity and can express themselves freely. Now we can. Now we must. The creative capacity that distinguishes the human species encourages us and gives us hope.

Infanticide? Let us unite all voices, all hands

It is now imperative not to forget the lessons of the past. Remember what happened in Europe and Asia to make it possible to unleash the horrible historical wrongs of slavery, colonialism, supremacism... and the holocaust, because the value of each life was not taken into account, because the foundation of all human rights —equal dignity— was omitted.

At the end of the two great ‘hot’ wars, in 1918 and 1945, two prominent American Presidents, Wilson and Roosevelt respectively, had attempted to establish a world order based on the force of reason rather than the reason of force. On both occasions, unfortunately, the perverse adage ‘if you want peace, prepare for war’ was applied unrestrainedly, always driven by the big arms producers, and security prevailed, as it had for centuries, over peace.

I think it is important to note the immeasurable damage caused by the US Republican Party's failure to support the League of Nations —created by US President Wilson! —Germany's war revival was made possible... and Hitler, in 1933, wrote in his book My Struggle that ‘the Aryan race is incompatible with the Jewish race’.

The seeds of fascism also bore fruit in the leadership of Benito Mussolini and in the fertile soil of Japan's Empire of the Rising Sun, with the Tanaka Plan and Emperor HiroHito..... This confluence of great supremacist movements gave rise to the Second World War, atrocious, with millions of victims, at the end of which President Franklin Delano Roosevelt established, with a perfect design, the United Nations, which, once again, could not take off the flight so well planned and so necessary, The United Nations was again prevented from taking off by the arms race of the two superpowers and by the animosity —as at the end of the First World War— of the Republican Party which, at the end of the Cold War, did not accept President Mikhail Gorbachev's proposal (Reykjavik, October 1986) to eliminate all nuclear warheads and placed the governance of the world in the hands of the G6.

There is an urgent need for a genuine re-founding of the European Union, on the ethical foundations of 1950.  In order to know where we want to go, to establish a precise ‘road map’ and never again start the construction of the European edifice from the roof (as has been done by implementing a monetary union without a prior economic union and, worse still, without a prior political union), it is essential to review where we have come from: look at the foundations of the Coal and Steel Treaty,... read the declarations of its architects and re-read the agreements they signed...

What did Robert Schumann, Jean Monet, Konrad Adenauer... proclaim? Well, that if conflicts were never again to be resolved by force, it was necessary to seek areas of understanding, of conciliation... always inspired by the democratic principles which, from that time onwards, would guide Europe.  ‘We will have to be able to invent new forms of governance’, exclaimed Schumann... Today, the veto prevents the democratic functioning of the great multilateral organisation of the United Nations and the European Union.

Faced with the terrible situation that thousands of children are living and suffering today, citizens should react and, at last, stop being impassive spectators of what is happening and become active actors, resolutely preparing to remove the veto that has prevented, for 78 years, the implementation of the United Nations Charter, whose first sentence expresses the long-awaited, urgent solution that cannot be postponed: ‘We the peoples... have resolved to save succeeding generations from the horror of war’ and which also prevents the European Union from speaking out and denouncing it.

On 5 February 2012 I wrote: ‘And it was the gaze of that child, in that war, that changed the course of my life at a stroke’... Since then, with my grandchildren and great-grandchildren and all the children of the world always in my sights, I have never ceased to cry out for peace, for justice, for equal dignity, for sharing, for living together.... To proclaim that, if we are able to look into the eyes of children, we will be able to embark, without hesitation, on the path of a culture of peace and non-violence, of a culture —the ultimate definition of daily behavior—of peace and harmony.

Citizenship aware that, without further delay, it can mobilise the media and many institutions and individuals for a great popular outcry that is capable of replacing vetoes with democratic, multilateral action... The ‘war-industrial complex’, which Eisenhower himself pointed out as the real American power, must cease to be the representative of force and become on a global scale the great protector of the word, allowing the reason of force to be transformed into the force of reason, inspired by the preamble of the UNESCO Constitution: ‘you shall act in accordance with democratic principles’.

The mobilisation of academic, artistic, scientific institutions... in favour of a new era in which plutocratic, supremacist governance is properly replaced by democratic governance, with mediation and speech well protected and secured, cannot be postponed. Garry Jacobs, President of the World Academy of Arts and Science, has forged the concept of ‘human security’ so that peace, on a territorial scale and in military terms, becomes peace on the scale of every human being (nutrition, education, environment, equality in dignity...).

Suddenly, wrote Leonardo Da Vinci, there are no longer on board rich or poor, young or old, black or white... only passengers toiling away, working together to survive, to avoid shipwreck.

This is the advice we should now be spreading by all means to make the ‘peoples’ aware of the situation in which, for the first time in history, humanity finds itself. Indeed, in recent years, a number of global threats have emerged as potentially irreversible processes, which need to be addressed and dealt with in time, before it is too late.

The more alert we should be, the more reactive we should be, the more we should consider tomorrow... the more we consider the present, the more self-absorbed we are, the more short-sighted we are... and we accept the unacceptable without remorse.

Hunger, helplessness, submission.  We need to engage resolutely and boldly against all kinds of violence.  Pope Francis once said that ‘it is not easy to know whether today's world is more or less violent than before, or whether the modern media and the mobility of our age make us more aware of violence or more accustomed to it’. I remember how impressed I was to hear Prof. Juan Antonio Carrillo Salcedo warn us, with his characteristic foresight, about the ‘globalisation of indifference’.

We continue to be impassive spectators, ‘distracted’, indifferent, silent... Crime of silence...! Until when?

In Paris, on 20 January 1990, I wrote these lines at the end of a poem:

‘We know / and therefore / we have no excuse / How can we / fall asleep / being accomplices?’. Until recently we didn't know what was going on.  Now we do.  Now the indifference is guilty....