Citizen and Scientific Consultation on Breast Cancer Screening in France- Steering Committee Report

September 2016


Steering Committee members of the Citizen and Scientific Consultation on Breast Cancer Screening are the authors of this report.

Chantal CASES

Economist, statistician

Director of Demographic and Social Statistics, INSEE President of the Health Data Institute


Medical Oncologist

Head of the Ambulatory Department of the Gustave Roussy Institute IGR


General practitioner

Therapeutic Education Trainer


Anthropologist, Inserm research director

Member of Cermes3 (Research Center, medicine, sciences, health, mental health, society, CNRS Inserm EHESS University Paris 5 Descartes)


Professor of Public Health, Nephrologist

Director of the Laboratory of Biostatistics Depidemiology and Public Health UPRES EA 2415 University Institute of Clinical Research of Montpellier)

Head of the BESPIM department (Biostatistics, Epidemiology, Public Health and Medical Information) of the CHU of Nîmes


Lecturer in the history of life sciences and bioethics at the University of Paris Est Créteil Val de Marne / ESPE,

Researcher lIRIS Institute for Interdisciplinary Research on Social Issues, EHESS CNRS Inserm Paris 13)


Professor of Public Health at the Faculty of Medicine of Lausanne

Director of the University Institute of Social and Preventive Medicine of Lausanne

Jean-Philippe RIVIÈRE

General practitioner

Editorial and community manager of the website


Emeritus Professor of Private Law at the École des hautes études en santé publique EHESP

Co-director of the Research Center "Normes, Sciences et Techniques" (CRNST), Institut des Sciences Juridique et Philosophique de la Sorbonne (UMR 8103)


Breast cancer screening is organized at the national level by health authorities. A scientific controversy has arisen because of doubts about the reality and magnitude of the decrease in the risk of death from breast cancer due to screening and the fear that it generates a greater or lesser number of over-diagnoses and over-treatments.

This consultation allowed the Steering Committee, with the support of INCa, to identify and interview citizen, health professionals, experts and to extensively work on this complex issue. The committee was consequently able to confront multiple opinions and reflections, and it relied on INCa's human and bibliographical resources, as well as on knowledge, discussions, personal and group research to observe, analyze, develop and then formulate recommendations and two potential scenarios for the future.

From a scientific point of view, the committee noted that most of the studies used were not French, and therefore obtained under different conditions from those set up in France, which can distort the interpretation that can be made. Moreover, it is not up to the committee to decide whether the benefits of organized screening outweigh the risks. Nevertheless, the committee was able to note the existence of numerous reviews on the subject, in particular numerous randomized or observational studies, as well as meta-analyses and synthesis reports, whose conclusions on the importance of reducing mortality, over-diagnosis and over-treatment diverge greatly. The question is therefore not resolved, in view of the differences observed between the results and the interpretations. These variations and the doubts that accompany them, fuel the controversy on the subject at the French and international levels.

The committee also noted dysfunctions in the current organization of screening and its consequences: unequal access, misunderstanding of the issues, confusion between primary prevention, screening and early diagnosis, lack of information on the risks and uncertainties of screening in the invitation letter sent every two years, absence of general practitioners in the organized screening pathway (they can certainly talk about it with the women who consult them, but only in the context of a consultation for another subject), misleading and outrageous marketing of the Pink October promotional month, partial reimbursement of ultrasounds exams poorly explained to women, doubts about the effectiveness of certain therapeutic strategies etc.

Committee recommendations :

  • Taking the controversy into consideration in the information provided to women and in the information as well as the education (initial and continuing) of professionals in this area, to ensure that women concerned by breast cancer screening have access to balanced and complete information, and professionals involved in breast cancer screening receive a training enabling them to acquire the relevant knowledge for accompanying women, offering them adequate aid for making their decision.
  • Improving scientific knowledge on breast cancer and conducting an ambitious evaluation of existing and future strategies by :
    • Implementation of research projects to study the natural history of breast cancer and its nature, in order to better differentiate the types of cancers and their possible progression;
    • Implementation of ambitious information and monitoring systems in order to allow a permanent evaluation of programs.
  • Evolution of breast cancer screening program enabling systematically :
    • Integration of the general practitioner in the screening process, while also taking into account other health actors such as the midwife and the gynecologist;
    • Double reading for all screening mammograms. It is not acceptable that today two screening systems coexist, with different criteria; 
    • Evaluation of ultrasound practice as a complementary act to mammography;
    • Stopping all early screening before the age of 50 for women with no particular risk factor by implementing a delisting of the procedure.
  • Integration of breast cancer screening strategies into a more global approach to prevention and screening, by the implementation of a dedicated consultation. This consideration of the person as a whole would allow a more adapted follow-up for each individual. Breast cancer screening, dissociated from other screening and prevention actions, does not really make sense in terms of public health.
  • Development of a strategy for breast cancer screening and follow-up that is hierarchically organized according to the level of risk. With the progress of knowledge in the research of markers of evolution, it might be possible to better identify for each woman both the over- and under-risk, which could prevent her from taking part in screening as it currently exists. It will then be necessary to set up a system for identifying risk levels and monitoring according to recommendations validated in reference manuals, with a real evaluation of recommendations implementation and a very strong reactivity for recommended actions according to the advancement of knowledge and the results from evaluations.

In conclusion, the committee considers that the implementation of these recommendations should significantly improve the current situation, which does not meet the requirements of informed decision-making and scientific validity recommended for proposing screening to healthy women.

In addition to these recommendations, the committee proposes two scenarios for making breast cancer screening strategy to evolve and for achieving the same objective: enabling the implementation, in the coming years and with validated technological tools, of a screening strategy adapted to the level of risk. To reach this objective, the committee has made the above recommendations and proposes two ways to achieve this through one or the other of these scenarios :

  • Scenario 1: Termination of the organized screening program, the relevance of a mammogram being assessed in the context of an individualized medical relationship.
  • Scenario 2: Discontinuation of organized screening as it exists today and implementation of a new organized screening, profoundly modified.

It is not the role of the committee to take a position on the proposed scenarios, but a significant improvement in the program seems essential to it, as a response to the existing controversy, in such a way that confidence in the chosen mechanism could be maintained.

These two scenarios reflect the diversity of opinions of the committee members, who consider as a whole that breast cancer screening should ultimately be part of an integrated and comprehensive public health approach.

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.


In September 2015, the Minister of Health announces a "citizen and scientific enquiry" to evaluate organized breast cancer screening programme in France and appoints an independent steering committee to oversee it.

  • This committee brings together:
    -leading health professionals (oncology, general medicine, epidemiology, public health)
    -professionals in the social sciences (anthropology, law, economics, history of science and bioethics), all with no financial or academic interest in breast cancer screening.

This French inquiry is the third independent evaluation of breast cancer screening in Europe, following those done in Switzerland and the United Kingdom (1, 2). All of them emphasized the need for complete and balanced information, and all recognised over-diagnosis as a serious harm; two (the Swiss and the French evaluation) made a recommendation to stop screening as currently conducted.

The process is conducted as follows:

  • Examination of the review of evidence (by a technical committee of the French National Cancer Institute (INCa)),
  • The committee supervises "a civil dialogue", a concept inherited from the French Revolution of 1789 (round tables, working sessions…).

A website :
-provides information on the consultation
-invites the public to express its opinion.
Two consultations :
-a citizen consultation of a group of 27 women from different regions of France and different socio-economic groups
-a parallel consultation of a group of 19 health professionals with relevant professional experience, but with no link to breast cancer screening.
A final public meeting for :
-the presentation of the recommendations
-answering questions.


Two scenarios:

-Full cessation of organized breast cancer screening;
-Stop the organized breast cancer screening as it is currently being performed and fully reconstruct it

If the program should be continued, the main recommendations of the women citizens :
-Neutral, complete information for women, the public, doctors.
-Acknowledgement of the scientific controversy within the information given.
-Practitioner training for help women's decision-making.
-Research program on the natural history of breast cancer(s) and on the effectiveness of new therapies.
-Assessment of the program on the impact of screening on quality of life, mortality and costs.
-Cessation of screening for women at average risk under 50 years of age.
-Reflexion on a screening based on the level of risk.

-These conclusions are very different from those of other juries (US Task Force, American Cancer Society, International Agency for Research on Cancer) which concluded that the benefits outweigh the drawbacks and continue to recommend the organized screening.
-One explanation could be the conflicts of interest of some juries, which were deliberately avoided in the three European enquiries.


The president of INCa, Norbert Ifrah speaks on a Health television program on 4 October 2016.
The letter from the President of INCa to the Health Minister is meant to summarize the report.
In this letter, Norbert Ifrah violently denigrates the first scenario, which he rejects outright.
-He states that "… by the affirmation of the report's authors… it would be very risky, generating inequities and losses of chance".
-But no trace of these remarks can be found in the consultation report.

The new French Public Health Agency (Agence Santé Publique France) publishes a report written in collaboration with INCa highlighting the "quality" of the organized screening program.


The INCa president's preference goes to the second scenario, which he reinterprets, reducing it to a simple adjustment of current practices: "proposals for readjustments….. that are in line with the rationale of the 2014-2019 Cancer Plan".


The Minister congratulates herself on the smooth running of Pink October in the media and expresses, in her press release, "The best chance of curing breast cancer is screening. However, still too few women used the organized screening. »

The 12-point action plan announced in the opening statement (April 2017) : "Breast cancer screening is therefore a major public health issue; to reduce mortality and morbidity related to breast cancer, but also to improve the quality of healthcare for those concerned. »


-creation of information tools for women for decision-making with the doctor.
-new medical consultation at the age of 50 to discuss options for cancer screening and prevention.
-information booklet accompanying invitations to screening and an online decision support.
-training to help doctors communicate about the risk/benefit balance and the limitations of screening.
-improving the technical quality of the program.
-establish a research program alongside the screening program.

The plan does not detail how these measures will be evaluated.

In reality

A downloadable booklet and a website created by the INCa, which are incomplete; this institute, strongly criticized by women citizens for its inability to provide good information, was entrusted with the revision of the screening.

Here are the contentious points:
-Underestimation of over-diagnosis.
-Over-treatment not mentioned.
-99% survival claimed.
-No visual support with real data.
-The effect on mastectomies not addressed.
A call for projects is launched among professionals to set up tools enabling them to inform women. This is in progress.
Screening remains in the ROSP (remuneration of doctors based on public health objectives).

Conflicts of interest :

Appointment of Ms. A.Buzin, former leader of the Inca, with the new Macron government, in May 2018.

All in all : a lot of movement, so that nothing changes.

But it is nevertheless going to change….

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.

Final report of the citizen consultation

15 Dec 2016

(Report of the Steering Committee)

In 2015, the Minister of Health has initiated a citizen consultation on breast cancer screening, with the creation of a website allowing everyone to express their opinions on screening, which is the subject of scientific controversy around the world.
Dr. Cécile Bour participated in two round tables for the Cancer Rose collective, one with citizens and the other with health professionals, which consisted of a 20-minute presentation followed by a half-hour debate.

The steering committee published its conclusions in October 2016

You will find them starting on page 128
(Role of Cancer Rose, page 72).

We list some of the comments before detailing the conclusions.

- Page 5
The committee raises the dysfunctions in the organization of screening: confusion about primary prevention, screening and early diagnosis, lack of information about risks and uncertainties in the letter sent to women, misleading and outrageous marketing and promotion.

- Page 38
We note that the committee raised the paradox of performance-based remuneration for physicians based on health objectives, with the objective that 80% of patients aged 50 to 74 years old should have screening exams, even though this is not a mandatory procedure. However, we note that this problem posed by ROSP is not subsequently included in the conclusions.

- Page 41-47
The committee takes up the characteristics of setting up a screening system.
Low cost: whether the cost is low for the individual, it is not low for the society.
This is published on page 46/47, it’s evaluated at 180 million in 2008.
Low variability between mammography readers (radiologists): low or not, if present, it has a major impact on the patient's future.
Reproducibility of the reading is not guaranteed.
Mammography has neither sensitivity nor specificity.
Regarding effectiveness: the benefit must be identifiable, this is where the controversy resides.

-Page 76
Analysis of the situation by the committee :

1-The natural history of cancer needs to be rethought in order to differentiate the types of cancers and their possible evolution.

2-Avoid confusion between prevention and screening

3-Saying that one in eight women will develop breast cancer is a misleading presentation, since this risk is a cumulative risk for all ages, calculated on a hypothetical population based on the risks observed in 2012. However, this risk should be considered by age group. With a follow-up of 20 years, for a 40-year-old woman this risk is 4%, for a 60-year-old woman it is 6%.

-Page 79
Requests that the absolute reduction in the risk of dying from breast cancer be presented in absolute terms, not in relative terms.
Even organizations that support organized screening recognize that the reduction in mortality is not solely attributable to screening.

-Page 81/82/83
Randomized studies are not conducted in France, nor are observational studies.
The risk/benefit ratio is not the expected one. The risks are more important in women without risk factors or symptoms.

The pink campaign, an incentive campaign, is out of date with the scientific uncertainty and even with the relevance of the organized screening.
It is therefore necessary to reinforce women's possibilities of choice with more balanced information. For the moment, the information is judged insufficient.
On the INCa website, the information is fragmented, difficult to locate, sometimes contradictory, and the over-diagnosis is addressed in an unclear manner.
The information on the french health insurance website is also criticized, without making concessions, as it is considered to be overly encouraging because it emphasizes the "advantages" of organized screening.

- Page 108
The committee is asking for information, not marketing. Women are misled by Octobre Rose in contradiction with their demand for fair information. Confusion between screening and prevention must be avoided.

- Page 109/110 /111-115
The benefit-risk balance must be addressed and the notion of uncertainty must be included, and we must talk about interval cancers and over-diagnosis.
The committee would also like to see information on side effects and the illusion of mammography as an ideal method for cancer detection should be corrected.
The invitation should not be a convocation, and should include information on benefits and risks.
Information and training should be offered to health professionals, and the information should not be inciting.

-Page 121
Tomosynthesis: its benefit-risk ratio remains to be confirmed and research protocols must be developed to evaluate its use in screening. Tools must be implemented for the assessment of the programme in real time.

-Page 123
The committee reiterates and emphasizes the urgency and importance of promoting studies on over-diagnosis and over-treatment.

-The report on page 125
A controversial risk/benefit ratio and inadequate communication.

-Page 132
1-Consultation dedicated for women on their 40s.
2-Strategy prioritized according to level of risk, identifying high-risk women who will benefit from special and adapted follow-up and "under-risk" women who could be exempted.


  • Consideration of controversy in the information provided to women and in the information as well as in the training of professionals.
  • Implementation of research projects to better study the natural history of cancer (some cancers are mildly aggressive or regressing, contributing to over-diagnosis), and to be able to identify biological or imaging factors to define tumors requiring only surveillance. (ARC proposal)
  • permanent evaluation of the system, in order to have epidemiological and economic data relating to screening in France
  • integration of the general practitioner
  • maintaining double reading (Cancer Rose draws attention to the fact that double reading certainly increases false alarms)
  • evaluation of the practice of ultrasound, which causes false positives, the increase of which is greater than the number of cancers effectively detected.
  • Stopping early screening in women under 50 years of age with no particular risk factors.
    Cancer Rose reminds that the official HAS recommendations for participation in screening are from the age of 50 onwards, and not before.
  • Adapt the screening and follow-up strategy according to the level of risk.

Two scenarios:

Scenario1: Termination of the organized screening program, the relevance of a mammogram being assessed in the context of an individualized medical relationship.

Scenario 2: Discontinuation of organized screening as it exists today and implementation of a new organized screening program, profoundly modified.

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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