INCa still outrageously dishonest and unethical

15th of October, 2021 

https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/DEPLIANT-Depistage-des-cancers-du-sein.-Guide-pratique

In June 2021, the French National Cancer Institute (INCa) issued a new leaflet, in addition to the brochure published in 2017, sent to women one time for their first screening appointment at the age of 50. This new leaflet will be distributed to all women for the following appointments, beginning at the age of 52. 

here: PDF of the leaflet

 REMINDER: 

1) The 2015 citizen and scientific consultation [1] allowed for the expression of two scenarios: "Scenario 1: Termination of the organized screening program..."; "Scenario 2: Discontinuation of organized screening as it exists today [2],..." and the claim for women concerned by breast cancer screening to have "balanced and complete information." [3]

2) It took two years for the French National Cancer Institute to publish in 2017 a very insufficient brochure [4], barely mentioning the harms of screening (pain during the examination, overdiagnosis, etc.) but not detailing them, focusing mainly on the very meager benefits, which are advantageously put forward.

3) In an international study, INCa's lack of objective information and manipulative nature were questioned [5], as was already the case for the citizen and scientific consultation report.

Today, six years after the citizen consultation, INCa persists and signs.

The proof is this new leaflet, which will be included in future biennial invitations sent to women aged 52 and over.

Analysis

The poor informative content of this leaflet allows a rapid analysis: NONE of the adverse effects of screening are mentioned. 

Instead, it states:

"This early detection increases the chances of a cure: it allows 99 out of 100 women to be alive 5 years after diagnosis."

CAUTION: Being alive 5 years after a diagnosis does not imply that you have been "cured." 
What about this generously promoted survival? 
First and foremost, it would be more accurate to present the 5-year survival rates of 100 women who were screened and 100 who were not screened.

Here's an insightful article that explains what survival means and why it isn't a reliable indicator of screening effectiveness https://formindep.fr/cancer-des-chiffres-et-des-hommes/

This is what survival means:

 "Survival" measures the length of time the cancer is present or the length of time a patient lives with cancer, but it does not measure the longevity or life expectancy. 
Screening creates an optical illusion by anticipating the date of cancer onset by detecting it before any symptoms appear. While the result is the same, i.e., death regardless of the time of diagnosis, this creates the impression that the patient's life is being prolonged. In reality, screening does not affect t women's longevity; it simply shifts the "window of observation" in the disease's history.

A diagram from the WHO screening guide, page 47, illustrates this lead-time bias [6] :

Or in this diagram: [7]

"Lead-time bias occurs when screening finds cancer earlier than that cancer would have been diagnosed because of symptoms, but the earlier diagnosis does nothing to change the course of the disease" (National Institute of Cancer (NIH) USA).

To illustrate the situation differently, let's use an analogy: a train heading for Paris derails in Orleans at 3 p.m., causing the death of all passengers. If I boarded at Tours, I would have a survival of 30 minutes; if I boarded at Bordeaux, I would survive 2 hours. Artificially, we can say that people who boarded at Bordeaux have longer survival than those who boarded at Tours, even though they did the same thing: boarding the train at a given moment.

Thus, the extension of survival is the result of two phenomena: the efficacy of treatments that would extend the life of a cancer patient and the anticipation and detection of several lesions that would not have caused the death anyway. Nonetheless, not all over-diagnosed women die! As a result, there is an illusion of success in the case of breast cancer because we are diagnosing numerous lesions that would never have caused the death...

"Survival" is a poor indicator because it is used to describe something that it cannot: the effectiveness of screening.

The only indicators of the effectiveness of screening are the decrease in mortality and the reduction of advanced cancers. However, it is not enough to say: "THE EARLIER A BREAST CANCER IS SCREENED, THE GREATER THE CHANCES OF CURE," it is necessary to prove with data and the INCa, carefully omits this point in the leaflet...

Why is this leaflet outrageously dishonest and unethical?

1. Again, French women are not receiving the critical neutral information to which women in other countries are entitled. This is a serious breach of ethics.  Women citizens were indeed asking for easy-to-understand decision aids (pictograms). [8]

2. The information on the risks of screening is not directly available. The word "risk" is never even mentioned, which is a deceitful way to make this information as inaccessible as possible.

Indeed, we can read on one of the leaflet's pages, "To learn more, talk to your doctor or go to "cancersdusein.e-cancer.fr." 

If the woman invited to the screening wants to know the unfavorable effects, she must go to this website [9] and look for the section(s) dealing with these adverse effects herself. 

Overdiagnosis is never mentioned as a title on this website's home page; the risks of screening can be found by clicking on the inserts "the benefits and limits of screening" and "breast cancer screening, risk 0 or not?"

The word "limits" is misleading and not appropriate. In its French version of the guide, the WHO uses the term "effets nocifs" (in English: harms) of screening, which weighs against the benefits. [10]

For a woman to say that screening has limitations means that screening is not completely effective and that there are probably cancers that are missed. But this term does not imply that screening has risks.

3. Addressing citizens' requests does not mean that INCa can disseminate deliberately truncated, false, misleading, and incomplete information, embellishing the benefits and concealing the risks at the same time as the letter of invitation. This is yet another example of disregard for women who will never have access to the truthful information to which they are entitled.

4. This process, which is repeated every two years, is, of course, a strong incentive because of its repetition.

5. The initial brochure was incomplete and has not been modified since 2018 despite its shortcomings [4]. But at least it addressed the possibility of overdiagnosis. The 2017 brochure is aimed at women aged 50 who are invited to perform breast cancer screening for the first time. It is only sent for the first screening, so women who turned 50 before 2017, now aged 55 or older, have never received it and will have to rely on this misleading and incomplete leaflet issued in 2021.

6. This new leaflet is supposedly "based" on the 2017 brochure, misleading, as overdiagnosis is never mentioned.

7. The new leaflet says: "to know more, talk to your doctor or go to the website...". The general practitioner can certainly be contacted, but in reality, the woman makes an appointment directly with the radiology office, mainly because the information in the leaflet focuses all its communication on the benefits of screening, leaving the practitioner no opportunity to properly inform the patients before they go for mammography screening. In any case, what question would a woman ask her practitioner since the notion of "risk" does not appear anywhere in the brochure?

8. In the "key information" section, it is stated that mammography is "reliable." This information is again misleading since mammography exposes women to false positives (suspected cancers that are not confirmed) and false negatives (cancers that are hidden or develop between two mammograms and are, therefore, "missed" by screening).

Why is INCa so consistent in providing promotional information about mammography breast cancer screening? 

Why has INCa's biased promotional communication remained unchanged over the years? This is a question that everyone should ask.

Since the introduction of organized screening for breast cancer in 2004, scientific knowledge about mammography screening has advanced, but INCa's "communication" has not changed. INCa still presents screening as very beneficial to women, as it does in this leaflet, without mentioning what is debated in France and worldwide. The major benefit is still asserted even though it is increasingly being questioned.

Furthermore, many risks have been updated, but this brochure does not even use "risk," implying that they do not exist. The INCa replaces the term "risk" with "limit," which is never used in the scientific literature on the subject.

Why is this mode of communication being used? 

For all of its years, INCa has focused its communication on promoting breast cancer screening by mammography. This communication is very different from what is done in other countries. [8]

INCa's goal is not to correctly inform women about organized breast cancer screening by mammography but to intensify it to "win the European competition." And this is done blatantly, disregarding scientific knowledge on the subject. 

As proof: in its detailed report "Ten-year strategy 2021/2030 to fight cancer," we read INCa objectives on p20, "Achieve one million more screenings by 2025. It is up to us to exceed the coverage targets recommended at the European level in terms of screening and to join the leading group in terms of adherence (70% for the Organized Breast Cancer Screening ......., ". [11] 

The INCa appears to be only following orders from the authorities. On the other hand, citizens have the right to expect objective information from such a health authority rather than "propaganda." 

Why is it critical for citizens to have access to information that INCa does not provide?

INCa's role was defined at the time of its creation (article L1415-2 of the Public Health Code); it was given two contradictory missions: to inform (paragraph 3) and to promote screening (paragraph 6). 

"Informing" means providing unbiased information about the benefits and disadvantages of a public health system. "Promoting" means ensuring that the public is effectively influenced to adhere to it, which contradicts neutral information because it tends to conceal anything that dissuades people.

As a result, there is an irreconcilable incompatibility between these two missions, as well as a clear conflict of interest when, as with this unworthy leaflet, INCa can congratulate itself for responding to citizens' requests for information while ensuring that this information remains outrageously biased.

This is precisely what the INCa is doing with this brochure, which is akin to infantilizing women by maintaining them in ignorance, assuming their inability to make an independent choice.

According to a French publication, in order to increase screening participation, women who are called upon to undergo it should not be given information.[12]

Given this situation, doctors and patients will have to adapt and seek the information necessary for everyone to make informed decisions outside the communication of the French health authorities.

Example of a brochure

It is not surprising that this manipulative information comes from an institute that does not hesitate to label the scientific debate on screening as "Infox" or "Fake news." [13]

Our Cancer Rose collective began delivering more balanced information in a leaflet several years ago without any financial outlay. It is in A5 format, downloadable and foldable, and is intended for women and doctors to distribute to patients at the end of their consultation.

Our collective will make a point of informing the leaders of the INCa's International Scientific Council. We will notify international actors and groups fighting in many countries for women to be recognized as intelligent beings deserving of information to ensure their choices and autonomy in health matters within the framework of informed consent.

References


[1] https://cancer-rose.fr/en/2020/12/14/final-report-of-the-citizen-consultation-report-of-the-steering-committee/

[2] page 132-133 du rapport https://cancer-rose.fr/wp-content/uploads/2019/07/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

Two scenarios proposed, both contain the words "stopping screening".

[3] page 128 du rapport https://cancer-rose.fr/wp-content/uploads/2019/07/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

[4] https://cancer-rose.fr/en/2021/01/01/critical-analysis-of-the-new-inca-information-booklet/

[5] https://cancer-rose.fr/en/2021/04/20/methods-of-influencing-the-public-to-attend-screenings/

[6] https://apps.who.int/iris/handle/10665/330852?locale-attribute=en&

[7] https://www.cancer.gov/about-cancer/screening/research/what-screening-statistics-mean 

[8] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

[9] https://cancersdusein.e-cancer.fr/

[10] https://apps.who.int/iris/handle/10665/330852

[11] https://solidarites-sante.gouv.fr/IMG/pdf/feuille_de_route_-_strategie_decennale_de_lutte_contre_les_cancers.pdf

[12] https://cancer-rose.fr/en/2021/01/24/objective-information-and-less-acceptance-of-screening-by-women/

[13] https://cancer-rose.fr/en/2021/07/13/the-national-institute-of-cancer-in-france-inca-relegates-the-question-of-the-benefit-risk-of-organized-breast-cancer-screening-to-the-fake-news-rubric/

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

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