The Roman stage of the Human Genome Meeting which began yesterday in Rome is an opportunity to return to talking about a topic as fundamental as it is uncomfortable: the impact of “privacy hysteria” on the possibility of carrying out research thanks to the enormous amount of data that , today, we can gather about the way we function – and “break”.
The Mapping of the human genome was a milestone in the development of human knowledge, but it represented a starting point, not an arrival point. The increase in the performance of tools for analyzing genetic samples, in the computing power of computers and in the capabilities of software (for example, we do not yet know how far we will go with deep learning) make a clear position from national legislators and transnational institutions on the possibility of using the data is essential – all data – to enhance medical-scientific research.
The dramatic experience of the pandemic has clearly highlighted the impact of ideological prejudices relating to a distorted notion of “privacy” on the possibility of effectively combating a disease through the collection and analysis of data. In fact, for once, and in general terms, it is not so much the rules that block research but rather their short-sighted and bureaucratic interpretation.
The Personal Data Protection Regulation (GDPR) contains operational simplifications when data are collected in the public interest of health protection, the European Health Data Space promises to facilitate the pooling of data to enhance research. However, the daily practice tells different stories, as in the case of bbizarre interpretation of the concept of “secondary use” (i.e. the possibility of using data which is already available) in the name of which if I have collected data for research on Alzheimer’s I cannot reuse them to carry out research on diabetes without asking the patients for consent again, or that of demanding that even retrospective observational research (those carried out exclusively on anonymized data and not “in vivo” on patients) is subject to the opinion of ethics committees and the provision of consent from the patient (assuming he is still alive).
We should realize, once and for all, that research based on (big) data and the methods for analyzing it cannot be managed by exploiting a regulation such as the GDPR, which is also antediluvian, in order to block the circulation of data.
While waiting for the EU to strike a blow, it would already be possible to make the work of those who work to heal people easier, all you have to do is want it, because we cannot, in the name of principles divorced from reality, claim to protect the person and, for this reason, sacrifice the individual.
It is not fair towards Science, it is not fair towards scientists, but above all it is not fair towards those who, in the name of abstruse reasoning, are denied the hope of defeating evil.
We can certainly continue to bask in the contemplation of (limping) regulatory architectures, but in the meantime other countries are forging ahead and inserting research into their geopolitical arsenal.
Once upon a time it was essentially war superiority that guaranteed the possibility of creating relationships of subordination with other countries, then Big Tech arrived to influence the actions of administrations and businesses, and now – thanks to the synergy between AI, robotics and biosensors – the new frontier is direct control over human beings.
Faced with such a scenario there are not too many options: we can only decide whether we are on the side of those who create the technology and use it for the common good, or whether to be on the side of those who can only use this technology provided that, of course, whoever controls it agrees graciously – by paying of course – this possibility.