Paris, Saturday, July 17 - The fight against fake news, especially in the health field, seems essential to reinforce the informed consent of everyone and the autonomy of people concerning their health. However, how to avoid that under the virtuous pretext of drawing attention to untruths, some focus first on their messages, sincerely convinced of their relevance and importance, omitting or denying the veracity of certain questions and controversies?
Wouldn't it be paradoxical and dangerous if those who present their work as a deciphering enterprise actually provide partial or even biased information?
On this subject the association Cancer Rose and the collective “Pour une inFormation indépendante en Santé” (Formindep) write to us today.
They alert to the way how the National Cancer Institute (INCa) would not always avoid a form of instrumentalization of the fight against fake news, by preventing by this means that comprehensive information on systematic breast cancer screening is provided.
Cracking down on fake news or hindering access to reliable medical information : What's new in France?
The French National Cancer Institute (INCa) conducted an internet-based "consultation" from September 22 to October 15, 2020. This consultation aimed for participants to vote "for" or "against" 220 proposals developed by the Institute for the new decennial Cancer Plan. Less than 2500 people took part.
One of the proposals is headlined "Set up a device to combat fake news ".
The text is as follows:
"A reactive anti-fake news system will be structured. It will enable people to be enlightened in the face of controversies likely to concern the various fields of cancer: primary prevention, screening, treatments, and complementary care. It is important to better inform public opinion, especially by using data that makes tangible the effects of prevention (international benchmarks, results of studies...). In addition, without being limited to the field of cancer, the creation of a "CSA Health" type system will be studied to implement rules for information in health, provided in a framework agreement with content hosts (media, social networks) to do a work of eliminating fake news identified by a college of experts."
CSA is the French acronym of “Conseil Supérieur de l'Audiovisuel », which is the French regulator of audiovisual.
The reservations expressed by some citizens did not prevent INCa from adopting this proposal with great diligence, based on the 124 voters among the 47.9 million inhabitants registered on the electoral rolls and without any representative power.
The proposal has already been incorporated, in a simplified form, into Decree No. 2021-119 of February 4, 2021, which defines the ten-year national cancer strategy.
In the paragraph "Improving prevention", we read the following sentence, although it is somewhat imprecise: "New devices will be created to combat fake news".
And in June 2021, the INCa launched a new rubric on its website to denounce "fake news", under the title "The Enlightenments".
A fully assumed project to censor information
And there's a bad surprise there, because under the heading mentioned above, "The Enlightenments", the controversy over breast cancer screening is immediately qualified as "fake news", with the following surprising wording: "This scientific debate may have a negative impact on women and turn them away from the screening".
While skepticism is fundamental to any scientist worthy of the name, the INCa succeeds in both censoring all scientific debate and promoting itself in a partisan manner, minimizing overdiagnosis, the central problem of screening, and concealing its serious consequences for women, namely overtreatment, by publishing a pro-screening propaganda text.
Three major concerns
1° Possibility that the INCa will acquire, in future, the excessive power to force internet media and social networks to censor information which the Institute deems unilaterally "fake."
This is frightening because it implies the establishment of authoritarianism in health. Zealous and intolerant defenders of their self-justified "truth" will thus be able to impose their peremptory right-thinking in a democracy, far from the interests of the population, affirming as an undeniable fact that "Breast cancer screening provides women with a benefit far greater than its risks."
This completely disregards the physical, psychological, and social suffering that women are experiencing due to overdiagnosis and its corollary, overtreatment.
2° Legitimacy of the INCa to provide information is questionable, as is that of taking a right to designate "fake news".
This institute was previously criticized for poor information quality in the 2016 report of the Citizens' Concertation on Breast Cancer Screening.
It has also been pointed out in two academic studies. In the first study cited, the information disseminated by INCa is compared to that provided by Cancer Rose. Beyond the brief abstract, the study's findings show that the information provided by Cancer Rose is superior to that of the INCa in terms of the criteria for information that must be presented to the public.
The second study, published by Danish authors, denounces INCa's methods for influencing the public to increase screening participation, classified in following systematic categories: “Misleading presentation of statistics” and “Misrepresentation of harms vs. benefits” .
Is it, therefore, legitimate for this Institute to act as a censor and issue injunctions to "eliminate fake news”?
3° Ethical principle of non-maleficence is blatantly disregarded in the new rubric created by INCa
INCa affirms breast cancer screening as having "undeniable benefits for women" .
The INCa article on breast cancer screening concedes that a certain percentage (though admittedly small) of women will be overdiagnosed and "treated unnecessarily".
Even if there were a massive overall benefit in the women's population, which is not the case, one of the limitations of breast cancer screening is that only some women will benefit, which is at the cost of harm to others.
Such a justification violates the fundamental principle in medicine: "first not harm", since individuals will obviously be harmed following the intervention of health professionals, at the instigation of the INCa, in search for a benefit that is neither certain nor proven. And not universal.
Will INCa's policy become censorship after a propaganda policy to develop screening? It is not possible to guarantee health democracy in our country, where freedom of expression and access to knowledge are fundamental rights, by acting in such an unworthy manner, both ethically and scientifically.
1. About the title
The expression Cancel culture has been variously translated as "culture of banishment", "of cancellation", "of ostracism" or "of ostracization", "of negation", "of annihilation", "of erasure", "of suppression", "of boycott" or "of boycott", "of public humiliation", "of interpellation", "of denunciation"
Thus, on July 7, 2020, in an article published in Harper's and translated in Le Monde, 153 artists, intellectuals and personalities denounced the culture of cancellation and the obstacles to the free flow of ideas and condemned the "intolerance towards divergent opinions".
6. Reference 1 of the article on breast cancer screening in the rubric "The enlightenments” is nothing more than a report from ... the INCa! (1 National Cancer Institute, "Benefits and limitations of the organized breast cancer screening program," 2013)
7. “Améliorons le dépistage du cancer du sein-concertation citoyenne et scientifique-Rapport du Comité d’orientation,” September 1, 2016. Page 84 and 85 of the consultation report: http://www.concertation-depistage.fr/wp- content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf
"The public consultation.... highlighted the very inadequate information available to women on this screening. And, for those that are specifically intended for them, we note that this information makes no mention of the controversy that it has been the subject of for several years, nor of the existence of a real uncertainty as to the benefit/risk ratio, nor of its limitations, both in terms of its true purpose (in this case, "detection") and its financial coverage.