Summary by Cécile Bour, MD
September 18, 2020
BMJ: first published as 10.1136/bmj.m3592 on 17 September 2020.
Quote this as: BMJ 2020;370:m3592
Published: 17 September 2020
Hazel Thornton is a health science researcher at the University of Leicester.
She received her PhD in Science from the University of Leicester for her contributions to medicine and patient care. The award recognizes her work in advocating for patients and changing perceptions within the medical research and health care community.
The BMJ publishes her letter on the subject of patients' informed consent, which is often flouted, even though this is a right and a major ethical issue.
Hazel Thornton refers to a publication by Helen Haskell  , founder of Mothers Against Medical Errors, which reports the severe criticisms of the "Cumberlege Report"  on the British health care system, judged "disjointed, siloed, unresponsive, and defensive”.
The report points to the failure regarding the informed consent of healthy patients, whose non respect is a violation of human rights according to the Declaration of Helsinki .
What is of great concern is “the testimony from hundreds of patients reporting lack of informed consent.”
While health care professionals are supposed to work “in partnership with patients to make good clinical decisions," which is at “the heart of good medical practice".
Informed consent and screening
Hazel Thornton writes in her letter to the BMJ:
Asymptomatic people, too, are the target of health professionals in preventive medicine. Medical interventions used in screening are not without potential for harm, so properly informed consent must be sought. Not to do so is an abuse of human rights. Flouting the four basic principles of medical ethics—autonomy, beneficence, non-maleficence, and justice—must not go unchallenged. Incredibly, in the 21st century, blatant disregard for the right to proper consent is still occurring. Two examples clearly illustrate this.
The first is an experiment to determine the effects of manipulating invitation information provided to around 6000 asymptomatic women in the province of Messina, Sicily, “to increase uptake” into their breast cancer screening programme. The second is the UK NHS breast screening programme AgeX trial, which was started in June 2009 and announced as “likely to be the largest randomised controlled trial ever undertaken in the world,” recruiting millions of women. Efforts to challenge this trial, with its flawed consent process, have met with “siloed, unresponsive and defensive” attitudes. 
H.Haskell says, "How to change it is still an unsolved problem. There have been inquiries, reports, and recommendations over the years, but the fundamental issues around power, justice, and compassion are still with us. " What can be done to end these blatant abuses of the right to properly informed consent and tackle the lack of engagement ?
Cancer Rose Reflections
Indeed, we have to draw a parallel with the European MyPEBS clinical trial on personalized breast cancer screening.
We have already reported its multiple shortcomings, which we denounced in a joint letter from 4 groups defending independence and integrity in health, a letter relayed among others in the BMJ.
Participants in this MyPEBS study are provided with a so-called consent brochure. The problem is that it does not comply with the law, which requires that this consent be based on fair, clear, complete and unbiased information.
We have summarized our concerns about the brochure for the MyPEPS study here (see point 3 ): https://cancer-rose.fr/my-pebs/2019/06/13/argument-english/
Over-treatment is not mentioned, with over-diagnosis indicated at its lowest range.
In conclusion, we have the same questions as Hazel Thornton:
After the French scientific and citizen consultation, which demands fair and complete information , how many laws, declarations, reports and investigations should we hope for in order to obtain the fundamental right to information and informed consent for the patient, and a firm and solid commitment from health authorities and governments to guarantee this right to the patient?
 https://patientsafetymovement.org/advocacy/patients-and-families/patient-advocates/helen-haskell/Founder of Mothers Against Medical Error
 Haskell H. Cumberlege review exposes stubborn and dangerous flaws in healthcare. BMJ 2020;370:m3099.
doi: 10.1136/bmj.m3099 pmid: 32763955
 World Medical Association. Declaration of Helsinki. https://www.wma.net/fr/policies-post/declaration-dhelsinki-de-lamm-principes-ethiques-applicables-a-la-recherche-medicale-impliquant-des-etres-humains/
5] Italian study on the manipulation of women, we talk about it here :https://cancer-rose.fr/en/2020/12/17/manipulation-of-information/
 Bewley S, Blennerhassett M, Payne M. Cost of extending the NHS breast screening age range in England. BMJ 2019;365:l1293.
doi: 10.1136/bmj.l1293 pmid: 30971394
We were talking about this trial
here : https://cancer-rose.fr/en/2020/12/29/cost-of-extending-the-nhs-breast-screening-age-range-in-england/ and here: https://cancer-rose.fr/en/2020/11/30/the-largest-clinical-trial-in-great-britain-on-breast-cancer-screening-was-halted/
See at the end of the article the summary of the citizens' requests in red, first point being related to the quality of information