What they have in common Henrietta Lacksan American lady who died of cancer in 1951 and Domenico Attianesepoliceman killed 38 years ago during a robbery whose case was recently reopened?
The answer is that both of their stories, albeit in different ways, were characterized by the conservation of biological samples and biometric data for over ten years, and the possibility of continuing to use them.
Henrietta Lacks’ cancer cells were “immortalized” in the cell line called HeLa (from the initials of the unwitting “donor”) and still constitute an important tool in the fight against cancer. While thanks to over ten-year conservation of biometric data found at the crime scenetoday it was possible identify two people suspected of having committed the murder of the superintendent of the State Police.
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In one case, the biological samples contributed and continue to contribute to the quest to defeat the evil emperor, as it was aptly called, by Siddartha Mukherjee, cancer. In the other case – as in many others, reopened thanks to technological progress – biometric data served to bring justice.
These two stories are the paradigmatic example of how the use of biological samples – and data in general – are fundamental to saving the lives and dignity of human beings and how, on the contrary, an ideological, wrong vision, out of time and out of history of “privacy” – and of its wrong synonym, the “protection of personal data” – put them at risk to protect an elusive “person”.
It is true, no one asked Henrietta Lacks for consent to reuse her cells, but as the US Supreme Court stated in a similar case, Moore vs. Regents of the University of California, even if the doctor who used the biological sample from the patient did not inform him that he wanted to use it for research, on the other hand it is not possible limit research by requiring researchers to verify the existence of consent for the use of each individual cell line. Furthermore, the Court ruled, once a tissue has been taken there is no posthumous interest in being rewarded if, sometimes years later, the analysis of the tissue leads to a discovery.
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Similarly, only the imprescriptibility of murder – the fact that the guilty of such a serious crime must be able to be found and convicted even decades later – gave the victim’s family the hope of being able to “let go” of the spirit of their dear, still held back on earth by the need for justice.
In the face of this, “in the name of privacy”, for years we have witnessed and continue to witness absurd limitations on medical and scientific research and investigative methods resulting from a subjective and bizarre interpretation of a community regulation, the famous “GDPR”.
The incredible story of the impossibility of carrying out contact tracing with technological tools during the pandemic (contrary to what was done, for example, in South Korea) and the sanction (then very recently disavowed by the Court of Udine with ruling 308/ 23) imposed by the Personal Data Guarantor on the Friuli Centrale Health Authority for having used patient data to manage the lists of vulnerable people to be vaccinated, are there to demonstrate the paradox.
To protect an abstract and evanescent idea of the person and their “fundamental rights and freedoms”, we prefer to hinder the exercise of public activities that are indispensable for the protection of the health of human beings, those made of flesh and blood and not of ideas intangible, and which the law should protect, not undermine.
Likewise, opposition “in the name of privacy” to the use of technological systems for criminal investigation and prevention forces the judiciary to enter the ring to face criminals with one foot in a concrete bucket and one arm tied behind the back.
Paradigmatic, in this sense, the sanction imposed on 11 January 2024 by the Personal Data Guarantor Authority on a municipality and a scientific foundation for having used data from the municipal video surveillance system in a research project aimed at detecting, thanks to artificial intelligence, radicalization phenomena in anti-terrorism function.
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On the merits, the decision to sanction the municipality is correct (but who knows why, not also the other subjects who participated in the research) because anti-terrorism and criminal prevention are tasks that fall to the central public security authority and the judiciary , certainly not to a mayor who has to deal with the much more modest and limited “urban security”. But the fact that those who have the legal right to use certain technological tools to protect the community can do so should be beyond question.
Yet, ruling similarly to what the Court of Human Rights did in the Marper v UK case, on 30 January 2024 the European Court of Justice ruled that biometric data and genetic samples of convicted criminals cannot be retained indefinitely. Also in this case we are faced with an ideological decision because it completely ignores the criminological data of the propensity to commit crime – legally translated into the institution of “recidivism” and the declaration of habitual delinquency – and the scientific data of the sharing of genetic heritage between blood relatives .
This means, with regards to recidivism and habitual delinquency, that the system deems it necessary to punish more harshly those who, after having committed a crime, commit others and those who “live” on illegality. Consequently, it is perfectly understandable (and compatible with the Constitution) that the State equips itself with the tools to facilitate the identification of serial criminals.
And it also means, as regards the sharing of genetic heritage between blood relatives, that the possibility of comparing genetic profiles belonging to different people allows us to identify, even if indirectly, possible subjects whose genetic profile is partially overlapping with that present in the national DNA database .
Moving from theory to practice, to understand the impact of this decision, if the interpretation of the GDPR adopted by the European Court had already been applied in Italy, perhaps the fingerprints collected at the scene of the brutal murder of Domenico Attianese would have already been destroyed and therefore it would not have been possible to reopen the case.
The common thread that links the decisions of the national data protection authority and those of the European Court is indiscriminate use of the precautionary principle, according to which since abuses of data are theoretically possible, then any use of them must be prohibited in advance. The principle, however, is stated without quantitative elements, i.e. “numbers” that allow us to concretely evaluate the real probability of these abuses occurring and therefore the validity of this approach.
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In other words, without data that supports the concerns of the Court and the Guarantor, speaking of a “risk for rights” linked to the availability of data of any kind means, in reality, applying a discretionary and unprovable “in my opinion”.
The classic defense when faced with these arguments is that “privacy” and security are not alternatives but that you can have both thanks to the GDPR but this is simply not true.
Protection of health, safety and justice necessarily require that the State adopt means that objectively limit the private sphere of the individual because, in such cases, individual protections must give way to the superior interests of the community. This does not mean, however, that the State should be free to do what it wants without any form of control, without the citizen being given the opportunity to defend himself.
And that’s the word”check” to be the keystone of all the reasoning carried out in this article. The GDPR, even if in its limited areas of application (which however do not include public order and safety and health protection), was issued to encourage the circulation of data, not to limit it. It should, consequently, be applied by sanctioning those who abuse the freedom guaranteed by the rules and not, as happens, by generating inertia and bureaucracy against those who, in good faith, are concerned about the lives of human beings and not of the veneration of an elusive and evanescent “person”.
There are all spaces to interpret the law in this way, you just need to have the “political will”, the common sense or the awareness to understand that the law serves to protect people’s lives, and not the opposite.