The tale of the cancer registry

TERMOLI. Once upon a time and now it is gone. We are talking about the National Cancer Registries Network that a scientific association, the Italian Cancer Registries Association (Airtum), had built using the meager resources of the National Health Service. Step by step, from the distant seventies, almost total coverage of the entire national territory was achieved. A very high quality database was created, which can be consulted in an absolutely free and transparent way via the web by everyone. This allowed the Italian Cancer Registers, variously located in Local Health Authorities or Research Centers, to enter the so-called “Cancer Incidence in Five Continents” and therefore in the periodic report of the International Agency for Research on Cancer (IARC) of the World Health Organization (WHO) which provides a picture of the changing trends in cancer worldwide. A “valiant” story, an intertwining of a sense of duty mixed with passion and competence. All this immense work collided with the so-called Privacy Law (Legislative Decree 30 June 2003, n.196 and subsequent amendments) which has always made it difficult for the Cancer Registers to acquire information of scientific interest that could have been immediately availability and would have made the work of scholars more complete and difficult to refute especially in court. That commitment had succeeded in isolating any conflict of interest and achieving maximum transparency with the online data available for anyone to consult. A goal that is valid not only scientifically but also democratically. What I fail to understand as a lawyer is the privacy lesions when it comes to consumers instead of cancer victims. We expose ourselves daily to online payments on the web and are cataloged, standardized, monitored and reached by more or less camouflaged and often unwanted customized market offers. If, on the other hand, we were to use the same data to save lives, for scientific research and for public health, privacy becomes an insurmountable limit! “Zero tolerance”. I am not a doctor, but, as a jurist, I believe that a Cancer Registry to have validity in the legal field (criminal and civil) must constitute the product of data with full scientific value which, by collecting and analyzing all the clinical information of each individual case of tumor, certain or presumed by location, time of onset and histology, accurately reconstructs the annual product of new true cases for each type of tumor that arises in a specific population and which expresses the risk of getting sick of those who belong to it. The prognostic judgment must therefore be rigorous, based both on scientific and statistical laws, and on general knowledge, recovering the personalistic value of the pathology: the coverage laws must be placed in the concrete situation that has occurred. It is what doctors call “cancer incidence”.

What the law must ask itself about this incidence. Certainly a specific analysis on how many and which cases of cancer can be attributable to polluting sources in a specified territory? What emerges when comparing different areas under specific analyzes? How many and which cancers are attributable to particular work activities? Which are the concrete ones that have proved to be the best diagnostic and therapeutic paths? Is it possible to identify certain or suspected cases of non-appropriateness in the National Health Service and perhaps prevent them in the future by introducing specific corrections? Do patients who are treated in small hospitals come out like others treated in large hospitals for the same cancer disease? Are there social inequalities in post-cancer survival? With the same diagnostic and therapeutic pathways, is healthcare expenditure identical? And much more that can also concern clinical and legal research. All this is today just a fairy tale because the institutive law for Cancer Registers has arrived (Law 22 March 2019, n.29 – Establishment and regulation of the national network of cancer registries and surveillance systems and the epidemiological report for health control of the population) which has provided everything with unchanged resources. The very precious Airtum database is no longer up to date. In fact, today it is abandoned (just go to the site and check). The National Cancer Registries Network no longer exists. There are individual Cancer Registers without comparison, indifferent to the homogeneity of the procedures, struggling for resources and boycotted for reasons of privacy and more. Legally, how do these facts take on relevance? Soon said. The first evident damage is a severe blow to the monitoring of the health status of those populations in whose territory of residence the forty-four contaminated sites of national interest for reclamation have been identified: Brescia, Marghera, Mantua, Taranto, just to name the most known to the chronicles. A great project, which has paid off but which today no longer has comparative data. The data on the incidence of tumors in those territories silently leaves the scene. There is even more. However, the cancer registry has another limitation: the data collected refer to previous years often very distant from the current data, and are disclosed with extreme delay. This means that the data, when we become aware of it, are already old compared to the current situation. The result is that when you want to use that information in support of a recent health damage to promote preventive interventions, they would have only cognitive value because those data could be contested for lack of topicality.

For this reason, the cancer register is only informative but does not help to understand which actions to implement in the immediate future to protect public health. In this sense, the “TRAILS” study – National Epidemiological Study of Territories and Settlements Exposed to Pollution Risk – is very useful if you specifically want to investigate how to intervene to reduce pollution in the SIN territories (Sites of national interest for remediation). What is certain is that taking cancer mortality as a reference is not enough. On the other hand, it is also useful to take into consideration the incidences of tumors and other pathologies, because the relevant data is how much a specific disease recurs in a population, which may not always have a fatal outcome, since adequate therapies can lead to recovery. Pathologies typically related to environmental factors – as reported in the scientific literature – such as childhood cancers, congenital malformations and cardiovascular problems can provide clear indications of damage due to recent environmental conditions and can suggest immediate interventions. To date, unfortunately, we are forced to reiterate that the tale of the cancer registry remains such and does not translate into a reality useful for the “true” common good.

Vincenzo Musacchio – Jurist.

Daniela Spera – PhD in Pharmaceutical Sciences, eexperience of environmental issues.