Partager ses données de santé en ligne

Le big data en santé, pour quels bénéfices et à quelles conditions?

Marisol TOURAINE, ministre des Affaires sociales et de la Santé, lance une grande consultation en ligne, accessible à tous, sur le “big data” en santé : chaque internaute peut dès aujourd’hui se connecter au site faire simple pour donner son avis sur cette nouvelle méthode d’analyse des données.

  • Quels usages souhaitez-vous voir émerger pour les patients, les professionnels de santé, les industries, les assureurs ou la puissance publique ?
  • À quelles conditions accepteriez-vous de voir vos données de santé utilisées à ces fins ?

Partager ses données de santé : pour quels bénéfices et à quelles conditions?, faire-simple, bigdatasante.

La consultation est ouverte jusqu’au 20 juin 2016.

La loi de modernisation de notre système de santé facilite l’exploitation et le partage des données de santé, dans le respect de la vie privée, pour tout acteur porteur d’un projet d’intérêt public. Pour concrétiser cette mesure, la ministre a mis en place dès septembre 2015 un groupe de réflexion chargé d’éclairer les enjeux du développement du “big data”, nouvelle méthode d’analyse de données extrêmement volumineuses et d’origines multiples. Il présentera ses conclusions au deuxième semestre 2016.

Pour compléter cette réflexion, la ministre souhaite interroger directement les internautes : c’est l’objectif de la grande consultation lancée sur le site pour recueillir leur perception du “big data” dans le secteur médical et leur avis sur les conditions dans lesquelles la puissance publique doit accompagner son essor. À l’issue de cette consultation, une synthèse des contributions sera envoyée aux participants et intégrée aux travaux du groupe de réflexion.

Lancement de la consultation en ligne sur le “big data”,

Le gouvernement souhaite mettre le numérique au service de la modernisation et de l’efficience de notre système de santé : dans cette perspective, Marisol TOURAINE présentera très prochainement la stratégie e-santé 2020.

Stilbestrol for veterinary use

0.5 mg and 1.0 mg DES tablets manufactured by Ormond Veterinary Supply Inc., Canada

image of stillbestrol
Stilbestrol Tablets manufactured by Ormond Veterinary Supply Inc., Canada.

DES was sold under many names including Distilbène®, Stilbetin®, Stilboestrol-Borne®, Benzestrol®, Chlorotrianisene®, Estrobene® and Estrosyn® to name just a few.

Many different companies manufactured and marketed this drug under more than 200 different brand names.

These Stilbestrol tablets – 0.5 mg and 1.0 mg – are manufactured at Ormond Veterinary Supply Inc. facility, Canada.

DES Drugs Pictures
Related Posts
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Increasing Trends in Male Reproductive Disorders, Environmental Exposures, Implications for Human Health

Half of all young men’s semen quality does not meet the reference standard of the World Health Organization

On this call, Dr. Skakkebaek presented his concerns about increasing trends in male reproductive disorders, including the significant global increase in incidence of germ cell tumors. He and colleagues from all over the world demonstrated that over half of all young men’s semen quality does not meet the reference standard of the World Health Organization.

Dr. Skakkebaek presented evidence linking testicular cancer, poor semen quality, childlessness, and rapidly decreasing fertility rates. He showed how there is little doubt that environmental factors, most likely associated with modern lifestyles, have – in a broad sense – had an adverse influence on male reproductive health. He and his group are examining a fundamental role that exposure to endocrine-disrupting chemicals may play in these trends, trends that in a few decades will result in decreasing populations in industrialized countries, and believes collaborative research is required to identify the causes of these adverse trends.

Sources and more information

Glyphosate studies: expert opinion proves a systematic misinterpretation

Environmentalists press charges against Monsanto and EU regulatory authorities

The Munich Environmental Institute (Umweltinstitut München) and Pesticide Action Network (PAN) Germany join PAN Europe and 5 EU environmental organisations in their legal proceedings against those responsible for the assessment of glyphosate in Europe (Monsanto, German government institute –BfR – and European Food Safety Authority-EFSA).

The EU environmental organizations, in an initiative taken by Global 2000 Austria file new evidence to the state attorney in Berlin today showing that the responsible institutions misinterpreted research studies during the assessment procedure in order to conceal the carcinogenic risks associated with glyphosate and facilitate its re-approval.

Environmentalists press charges against Monsanto and EU regulatory authorities, pan-europe, April 21, 2016.

Epidemiologist Prof. Dr. Eberhard Greiser of the University of Bremen emphasizes BfR rejected almost all epidemiological studies on the carcinogenicity of glyphosate for unfounded reasons, disqualifying them as “not reliable”. According to Greiser,

“BfR applied the incorrect methods for analysing and rejecting these studies and EFSA approved them. These provide evidence that would hinder the re-approval of glyphosate.”

An earlier analysis undertaken by toxicologist Peter Clausing (PAN Germany) had already shown that studies submitted by the industry on carcinogenicity using laboratory mice had been falsely evaluated, and significant evidence of carcinogenicity in the animals had been concealed.

“Two of these mice studies on carcinogenicity were also evaluated by IARC experts who in contrast to BfR, accepted the significant incidence of tumours as relevant”

says Angeliki Lysimachou of Pesticides Action Network Europe.

In its final assessment the BfR accepted that the IARC/WHO findings were correct, and admitted to having simply adopted the statistical evaluations presented by the industry but still, both BfR and EFSA kept their conclusion that glyphosate is “non-carcinogenic”. In response, in an open letter to the EU commission 94 respected scientists criticised the BfR and EFSA’s assessment as “scientifically unacceptable”, “fundamentally flawed” and “misleading.

“The large number of weaknesses in the licensing procedure of glyphosate give the impression that the authorities and manufacturers have been working hand in hand to keep glyphosate on the EU market by all means,”

says Sophia Guttenberger, biologist and adviser on consumer protection at the Environmental Institute in Munich.

“If there has been deliberate manipulation of the new licensing procedure for glyphosate with the intention of approving a carcinogenic substance, then this would be defrauding 508 million EU citizens,”

states Viennese lawyer Dr. Josef Unterweger.

A critique on the rejection of Epidemiology studies by EU athorities, PAN Europe, 5 April 2016.

For this reason Dr. Unterweger is pressing charges on behalf of Munich Environmental Institute and the six environmental organisations: Global 2000, Pesticide Action Network (PAN) Europe, PAN Germany, PAN UK, Générations Futures (France), WeMove Europe, and Nature & Progrès Belgique. A report will also be submitted to OLAF, the European anti-fraud office.

Gendered Medical Science: Producing a Drug for Women

by Susan E. Bell, Published by: Feminist Studies, Inc.

image of Producing-a-Drug-for-Women book
Gendered Medical Science: Producing a Drug for Women, by Susan E. Bell, Feminist Studies, 21, (3), 469-500, 1995.

With the publication of The Doctor’s Case against the Pill; Witches, Midwives, and Nurses: A History of Women Healers; and Complaints and Disorders: The Sexual Politics of Sickness, in the late 1960s and early 1970s, feminist scholars and activists began to examine ways in which medicine produces diagnoses and treatments that are harmful to women, depicts women in textbooks and scholarly reports in stereotypical and negative ways, and is not objective and value free. Along the way, feminists uncovered ways in which medicine has also been beneficial to women, introducing further complexity into our critique. More recently, feminists have explored how medicine itself is riven with tensions, contradictions, ambiguities, and uncertainties, even at the same time that it retains power in relation to women. Today, feminist scholars are exploring the extent to which medicine is not a monolithic enterprise, while they continue to analyse its consequences and resist those that are negative for women.

This article explores tension in one domain of medicine, It focuses on the links between transformations in medical science and cultural ideas about women using evidence drawn from medical discourse about the safety of the first synthetic oestrogen, DES (diethylstilbestrol). In the 1970s and 1980s, North American feminists undertook the research, political action, and litigation that made DES an infamous instance of medical intervention into women’s reproductive lives. Like the Dalkon Shield, DES initially appeared to be a benign and exciting reproductive technology but in the long run had profound and damaging consequences for women.

More DES DiEthylStilbestrol Resources

Glyphosate : le désherbant de la colère

Il est important, pour les particuliers comme pour les professionnels, de réduire significativement l’utilisation des pesticides et de favoriser l’usage d’alternatives plus respectueuse d’un développement durable

Vidéo publiée le 18 avril 2016 par la chaîne FRANCE 24.

Au Parlement européen cette semaine le débat fait rage autour d’une substance qui fait polémique : le glyphosate, une substance utilisée dans les pesticides comme le Round Up du groupe Monsanto.

En savoir plus

  • Les députés européens ont demandé mercredi à la Commission de ne renouveler l’autorisation du glyphosate que pour 7 ans au lieu des 15 prévus, en raison des inquiétudes quant à son caractère cancérogène.
    L’Autorité européenne de sécurité des aliments estime qu’il est peu probable que le glyphosate soit cancérigène, mais de leur côté le Centre international de recherche sur le cancer et l’Organisation mondiale de la santé affirment le contraire. Les écologistes exigent un retrait pur et simple du glyphosate, tandis que les agriculteurs et les professionnels de la chimie le jugent irremplaçable pour lutter contre les mauvaises herbes.
  • Le glyphosate est-il cancérogène?
  • Utilisation du Glyphosate interdite dans la Région de Bruxelles-Capitale.
  • Nos posts tagués pesticides et nos vidéos en français.

Les riverains victimes de pesticides témoignent

Vous êtes directement concernés par ce sujet?
Rejoignez la mobilisation citoyenne!

Teaser publié le 14 avril 2016 par la chaîne Générations Futures.

Des riverains de zones agricoles exposées aux pesticides se réunissent pour la premère fois en France avec l’aide de Générations Futures.

En savoir plus

How Pharmaceutical Companies Entice Doctors into Prescribing Expensive Medication

An excerpt from Dissenting Diagnosis, by Arun Gadre and Abhay Shukla, published by Random House India

Written by the doctors and public health advocates Arun Gadre and Abhay Shukla, Dissenting Diagnosis is based on a study conducted at Support for Advocacy and Training to Health Initiatives, a Pune-based non-governmental organisation. During the course of this study, Gadre and Shukla interviewed 78 doctors from across the nation in an effort to confront what they consider is an ongoing crisis of the medical profession: doctors, they write in their introduction to the book, are finding “their traditions of ‘keep patients foremost’ rapidly buried under the ruthless logic of ‘keep profits foremost.’” Gadre and Shukla discussed with these medical professionals issues such as lack of regularisation in the private sector, unlawful and unethical practices routinely followed by doctors, the influence of pharmaceutical companies, the state of medical education, and the possibility of a universal healthcare system.

How Pharmaceutical Companies Entice Doctors into Prescribing Expensive Medication, caravanmagazine, 16 April 2016.

In the following excerpt from the book, interviewees speak to the writers about the hold of the pharmaceutical companies over the medicines prescribed by doctors. They describe how, through offers of gifts and benefits, aggressive marketing and sheer persistence, representatives from pharmaceutical companies routinely entice doctors into prescribing expensive and often unnecessary medicines to their patients. The pharmaceutical companies, one of the doctors said, are “like a pack of wolves.”

“Some of my doctor friends boast to me that they have travelled the world, sponsored by pharmaceutical companies. One was telling me with pride that even their shirts, pants, vests and underwear are given by pharmaceutical companies!” says an ophthalmologist from a medium-sized city.

Dr Suchitra, a general practitioner in Chennai, mentions, “The pharmaceutical companies offered to sponsor me for a conference, but I refused. I usually prescribe generic medicines or cheap, branded medicines. But the interesting thing is that once these pharmaceutical companies realized I don’t prescribe their medicines, they stopped visiting me.”

“I have been practising for thirty years. I have not given any ‘cuts,’” a super-specialist from a metropolis shares. “I did not encourage pharmaceutical companies. I change the medicines prescribed to my patients, prescribing cheaper medicines if expensive medicines have been prescribed. And what a big difference this makes to the patient! Sometimes the cost is reduced as much as Rs 35–40 per tablet! Patients are often unnecessarily prescribed expensive brands of medicines, for years on end, sometimes for life. The hapless patient keeps taking these medicines.

“Once, four medical representatives visited me with their bosses. They tried to convince me that I should not replace their brands, while prescribing cheaper brands to patients. We discussed the matter for an hour and their argument was that their company does a lot of research, on which they spend crores of rupees. That is why their brand is more expensive by Rs 30 per tablet.

“After they had finished their speech, I took Rs 1000 out of my pocket and handed it to one of the bosses. Surprised, he asked me what this was for. I answered: ‘You are doing such good work for humankind. This is my small contribution!’”

“After that I emphatically told them that I would help them, but how could I do this at the patients’ expense without telling the patients? Of course, they had no answer to that.”

A big-city surgeon remarks, “Pharmaceutical companies sponsor conferences where nobody bothers to listen to the lectures. Doctors just go to the stalls, and collect gifts. They enjoy the free drinks. It is a filthy business. What can one say?”

“Medical representatives influence the doctors. One of them offered me a trip to Singapore. I refused and told him that I would go at my own expense, and when I wanted,” said a general practitioner from a big city.

A super-specialist from a metropolitan city also shares, “The medical representatives are really persistent; they don’t leave you alone. Earlier, I would get angry at them. One of them pleaded with me, “Sir, you are the only one left. The other doctors, like you, who would earlier not take gifts, have all gradually succumbed. That’s why I am now meeting you too.” Since then, I don’t get angry with them.

“Recently, a medical representative brought along a diamond necklace as a gift, worth Rs 1 lakh.

“I asked him, ‘What’s this?’

“‘A diamond necklace, sir.’

“‘For whom?’

“‘It’s for your wife.’

“Controlling my temper, I asked him, ‘How do you dare to put a necklace on my wife’s neck?’

“The poor fellow was taken aback. ‘It is you . . . you will put the necklace on your wife’s neck.’

“Giving it back to him, I told him in a calm voice, ‘If that is so, then I will buy it with my own money. That is, if she wants a necklace at all!’

“The poor fellow left with the necklace.”

Dr Sumit Das, a psychiatrist from Kolkata notes, “Pharmaceutical companies exist to do business and make profits. But what about doctors? They too put pressure on pharmaceutical companies, telling them, ‘If I prescribe your medicines, send me on a tour to Europe.’

“In the field of psychiatry, pharmaceutical companies bring out new medications every day. There is no evidence that the new medications are better than the cheaper and effective medications that are already in use. And keep in mind the fact that our patients don’t take these medications for just a few days, but often for months or even longer. Yet these unnecessarily expensive medicines are sold and also prescribed.”

“Pharmaceutical companies could have donated money to our department and our institution by cheque. But instead of doing that, I would repeatedly be offered personal gifts, foreign trips, etc. Those salesmen would tell me openly that they are willing to spend on an individual, not on the institution,’ comments a general surgeon from a metropolitan city.

A paediatrician from a metropolitan city suggests, “The practice of pharma companies sponsoring doctors for conferences and CME (Continuing Medical Education) workshops must be stopped immediately.”

A gynaecologist from a big city observes, “The area manager of a pharmaceutical company once paid me a visit along with his army of representatives. He asked me why I regularly use a certain product manufactured by them.

“I answered, ‘It is cheap, it is effective. That’s why.’

“He was confused. He asked me in bewilderment, ‘Madam, we never give you any gifts.’

“I replied, ‘There is no need for that.’

“He just could not believe it. He kept asking, ‘How can this be, madam? Please tell me the reason.’

“This is the ridiculous situation that prevails. This is the reality.”

A paediatrician from a big city mentions, “Our branch [of a doctors’ association] was functioning well. We would organize CME workshops with our own funds. Gradually, the pharmaceutical companies pushed their way in. From 1995 onwards they began to organize their own CME workshops. Earlier, we would focus on the issues of importance that we had decided upon. But then the pharmaceutical companies began to select only those topics that would help them promote their new drugs. The workshops were free, with liquor thrown in. Finally the doctors in our city decided that all workshops henceforth would be organized by the pharmaceutical companies. I would ask them why they couldn’t spend Rs 1000 per year on their own education. Why do you want it free? Finally, through a secret ballot, my opposition was set aside and the basic principles of our [doctors’ association] branch were changed in favour of the pharma companies. Obviously, I withdrew from it. Now all workshops in our city are conducted by pharmaceutical companies.”

“A rampant malpractice is in the area of prescribing vaccines—it is organized, and takes place on a large-scale in planned fashion. The practitioner gets a cut on the Maximum Retail Price (MRP). The more expensive the vaccine, the higher the cut. The cut is even more than the consultation fee. The doctor gets both—the cut from the company and the fee from the patient,” notes Dr Vandana Prasad, a paediatrician from Delhi.

“The pharmaceutical companies are like a pack of wolves. They keep pestering you and encourage you to accept some incentives. Once you take anything from them, they immediately become arrogant. Now they begin to ask you directly, ‘Why don’t you prescribe our medicine?’ They start dictating terms, and because you have accepted money and gifts, you are morally bound to them,” Dr Sanjay Bhatnagar, a paediatrician from Delhi, also shares.

A surgeon from a megacity mentions, “The government cannot provide funds, and if the pharmaceutical companies therefore sponsor conferences in a transparent manner, there is nothing wrong with it. The MCI wanted to do something about this.”

A skin specialist from a big city says, “The pharmaceutical companies have created mayhem. Things like conference sponsorship by drug companies must be stopped. The MCI is aware of the problem, but there are lots of loopholes that can be exploited. Nowadays, doctors take money from pharmaceutical companies and prescribe ten to twenty medicines in a single prescription. There is always an antioxidant tablet prescribed, whether it serves any purpose or not.”

A skin specialist from Kolkata, Dr Jayant Das also remarks, ‘Now pharmaceutical companies are resorting to a new strategy. “For example, they don’t even produce Doxycycline (an established antibiotic) capsules, which cost less than Re 1 per capsule. Instead, they add a useless component like lactobacillus with Doxycycline, and then sell each of those capsules for Rs 5. And when the ordinary, cheap Doxycycline capsule is not even available in the market by design, one has no choice but to prescribe the expensive medicine. This is happening without any check with respect to many medications. One company recently withdrew a medication available for Rs 2. They made some token changes in the formulation and the same tablet is now sold by them for Rs 15!”

Another skin specialist from a big city observes, “Pharmaceutical companies try to give money to doctors under the pretext of conducting studies on their medicines. Such bogus clinical trials are conducted openly. The doctors lure the patients with the promise that the stated medication has come from abroad, and if you want to have it free, you would have to just sign this form, that’s all! Please sign here. Doctors collect the signatures on the forms. Sometimes they just fill up the details. Once they have given the papers for ten to twelve cases (even without prescribing the medication) they get a cheque from the pharmaceutical company.

“If one puts an end to the money pharmaceutical companies spend on doctors, medicines will definitely become much cheaper. That must be ensured, for the benefit of patients. Doctors should be legally compelled to prescribe only generic medicines.”

A general surgeon from a big city offers, “Take the example of Lactulose, which is used to treat constipation. It costs about Rs 180 for 200 ml, that is, around Rs 900 a litre. This is a by-product of the sugar industry. Actually, this should cost less than sugar, i.e., less than Rs 60 per kg. Elderly people will be taking this for years together. Shouldn’t the prices of such medicines be regulated? No. The loot continues.”


Sperm epigenetics affect the next generation

Sperm is epigenetically programmed to regulate gene transcription in embryos

A frog study provides the strongest evidence yet that a father’s lifestyle may affect the next generation, via chemical tags that change gene activity…


For a long time it has been assumed that the only role of sperm at fertilization is to introduce the male genome into the egg. Recently, ideas have emerged that the epigenetic state of the sperm nucleus could influence transcription in the embryo. However conflicting reports have challenged the existence of epigenetic marking of sperm genes, and there are no functional tests supporting the role of sperm epigenetic marking on embryonic gene expression. Here we show that sperm is epigenetically programmed to regulate embryonic gene expression.

First evidence that sperm epigenetics affect the next generation, newscientist, 13 April 2016.

By comparing the development of sperm- and spermatid-derived frog embryos we show that the programming of sperm for successful development relates to its ability to regulate transcription of a set of developmentally important genes. During spermatid maturation into sperm, these genes lose H3K4me2/3 and retain H3K27me3 marks. Experimental removal of these epigenetic marks, at fertilization, deregulates gene expression in the resulting embryos in a paternal chromatin dependent manner. This demonstrates that epigenetic instructions delivered by the sperm at fertilization are required for correct regulation of gene expression in the future embryos.

Sperm is epigenetically programmed to regulate gene transcription in embryos, researchgate, Apr 04, 2016.
Image of Man and Boy.

The epigenetic mechanisms of developmental programming revealed here are likely to relate to the mechanisms involved in transgenerational transmission of acquired traits. Understanding how parental experience can influence development of the progeny has broad potential for improving human health

Out of the Past

Old Exposures, Heritable Effects, and Emerging Concepts for Autism Research

The presentation highlights a significant gap in autism research: what factors might be driving the heterogenous de novo genomic errors seen in autism?

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