Ce que les missions d’enquête ne vous diront jamais
Sang contaminé, hormone de croissance, Distilbène, cérivastatine, Vioxx, Acomplia, Avandia, Di-Antalvic, vaccins contre l’hépatite B, la grippe ou le cancer de l’utérus : les gens n’en peuvent plus de constater que rien ne change malgré l’accumulation des scandales pharmaceutiques, et qu’en plus, tout semble s’aggraver dans une ambiance révoltante d’impunité.
Il s’agit donc de dire aux citoyens qu’ils ont raison d’être inquiets, de leur montrer que les réformes qu’on leur propose n’ont d’autre objectif que d’aggraver les conditions qui ont rendu possibles tous ces scandales, de les convaincre enfin qu’ils n’ont aucun motif sérieux de retrouver la confiance. Bref : de leur donner des éléments de fait suffisants pour inspirer leur protestation et alimenter leur résistance.
On partira le plus souvent d’expériences concrètes dont l’interprétation saute déjà aux yeux du plus profane, pour en tirer matière à une réflexion plus abstraite, tout en essayant de caractériser le rôle des principaux acteurs à l’œuvre : les médecins, les experts, les journalistes, les fabricants.
Table des matières
Chap. 1 – Les médecins
– Dérive vers le préventif
– Information médicale
– Sens des sources
– “Le roman de la médecine”
Chap. 2 – Les experts
– Conflits d’intérêts
– Rôle des décideurs
– Impunité et inamovibilité
– L’illusion du processus collégial
– Erreur et obstination
Chap. 3 – Les journalistes
– Formation intellectuelle
– Vérification des sources
– Conflits d’intérêts
Chap. 4 – Les fabricants
– Un monde méconnu
– Inflation réglementaire
– Un business insolent
– Associations de patients
– Risque zéro
A History of Childbirth from the Garden of Eden to the Sperm Bank, by Randi Hutter
From a witty, relentlessly inquisitive medical writer, an eye-opening history of pregnancy and birthing joys and debacles. Making and having babies—what it takes to get pregnant, stay pregnant, and deliver—has mystified women and men for the whole of human history. The birth gurus of ancient times told newlyweds that simultaneous orgasms were necessary for conception and that during pregnancy a woman should drink red wine but not too much and have sex but not too frequently. Over the last one hundred years, depending on the latest prevailing advice, women have taken morphine, practiced Lamaze, relied on ultrasound images, sampled fertility drugs, and shopped at sperm banks.
In Get Me Out, the insatiably curious Randi Hutter Epstein journeys through history, fads, and fables, and to the fringe of science, where audacious researchers have gone to extreme measures to get healthy babies out of mothers. The book has a full, good chapter on DES.
La chercheuse Barbara Demeneix, biologiste au Muséum national d’Histoire naturelle, nous explique dans cet entretien l’influence des perturbateurs endocriniens sur le développement du cerveau de l’enfant. Pour détecter les perturbateurs endocriniens, cette scientifique utilise des têtards qui changent de couleur en fonction de la présence de polluants.
Des scientifiques avaient alerté, le 16 juin dernier, les vingt-huit ministres européens chargés de l’environnement sur la faiblesse du projet de réglementation européenne de ces polluants. Pour Barbara Demeneix, il y a urgence à agir.
In her latest book, Professor Barbara Demeneix explains how exposure to endocrine disrupting chemicals is resulting in reduced IQ levels in children and higher rates of Autism Spectrum Disorder (ASD). The author also explains the approaches needed to reduce exposure to today’s toxic cocktails.
Presents evidence, derived from a wide spectrum of scientific and epidemiological studies, that many of these chemicals are interfering with one of our bodies’ most essential regulators of brain development: thyroid hormone.
Offers number of recommendations for individuals to apply in their day-to-day life and suggest actions that should be taken at the regulatory level.
Goes through the main catalogue of chemicals that can interfere with thyroid hormone production and action.
Tells the personal story of how the author became aware of these problems.
Simply presented ways to decrease your individual chemical load to protect yourself and unborn children.
Human health and well‑being are intimately linked to environmental quality
Human health and well-being are intimately linked to environmental quality. This has been recognised for decades amongst policymakers in Europe, and most recently appears as a cornerstone in the European Commission’s proposal for the 7th Environment Action Programme. This report, produced jointly by the European Environment Agency and the European Commission’s Joint Research Centre, outlines a number of environmental issues with a direct influence on people’s health and well-being and is a follow-up and update to the 2005 EEA/JRC report.
In the 8 years that have passed, the political context of environment and health has evolved. As highlighted in EEA’s The European Environment — state and outlook 2010 the policy focus is increasingly shifting from single environmental pollution issues towards systemic challenges regarding the maintenance of ecosystem resilience and the delivery of ecosystem services to human society. Climate change is a good example with its combined impacts on food and water security, heat waves, flooding risks and potential spread of diseases.
Where problem detection and measures in the environment and health area have typically been based on dose-effect studies of individual polluting substances and stressors, this new report makes the case for a more integrated take on health issues, acknowledging the complex inter-linkages between resource-use patterns, environmental pressures, multiple exposures and disease burden, as well as the key role that social inequalities play.
It also touches upon emerging issues resulting from long-term environmental and socio-economic trends, such as climate change, lifestyle and consumption changes and the rapid uptake and application of new chemicals and technologies. As such, it complements the recent EEA publication Late lessons from early warnings; science, precaution and innovation, which makes a strong argument for precautionary science in political decision-making, allowing us to strike a better balance between using economic opportunities and avoiding disproportionate risks to the environment and human health and well-being.
Environment and health is not just ‘an aspect’ of environmental policy, it is at the heart of it. In fact, it is central to Europe’s ambition to move towards a Green Economy. With this report, taking stock of the most pertinent environment and health issues, and combining the expertise of our two institutes in environmental reporting and scientific research, we hope to contribute to this goal.
An investment in knowledge pays the best interest ~ Benjamin Franklin ~
There is something profoundly wrong with the way we are living today. There are corrosive pathologies of inequality all around us — be they access to a safe environment, healthcare, education or clean water. These are reinforced by short-term political actions and a socially divisive language based on the adulation of wealth. A progressive response will require not only greater knowledge about the state of the planet and its resources, but also an awareness that many aspects will remain unknown. We will need a more ethical form of public decision-making based on a language in which our moral instincts and concerns can be better expressed. These are the overall aims of Volume 2 of Late lessons from early warnings.
Volume 1 of Late lessons from early warnings was published at a time when the world was experiencing an economic slowdown, China had joined the World Trade Organization and western Europe was still a 15-member Union. Global grain production had declined for the third time in four years due mainly to droughts in North America and Australia, and the world saw major recalls of contaminated meat, foot and mouth disease and bovine spongiform encephalopathy (mad cow disease). Global temperatures continued to climb and many bird populations were in decline, but the United States of America had rejected the Kyoto Protocol. We were seeing ourselves through the lens of the first human genome sequence, yet we were trying to manage chemicals known to be harmful to humans and ecosystems, through international conventions and treaties such as the Basel Convention to deal with toxic waste dumping in the developing world; the OSPAR/HELCOM Conventions to reduce the discharges, emissions and the loss of hazardous substances into the sea and the Montreal Protocol, to phase out ozone-depleting substances. The destruction of the World Trade Center had just happened.
Since then, we have witnessed a period of extraordinary hubris. Most visibly, the financial profligacy of the first decade of the century led inexorably to the crises of 2007–2009 whereby the major components of the international financial system were weakened to the extreme by indebtedness, mispriced products, lax monetary policies and mis-engineered protection against risks and uncertainty. The world experienced more not less volatility. Political systems became silted up by vested interests and a determination by citizens to protect assets accumulated in easier times, and beneath it all lay a deeper environmental crisis epitomised by climate change and biodiversity loss.
There was also a collapse of trust, not only in financial institutions but in big companies, as they abandoned staff, pensions and health care schemes. Recent evidence from social psychology has shown that despite rising levels of education and innovation in products and services, people trust only those they know and not strangers. As Stephen Green said in Good value: reflections on money, morality, and an uncertain world in 2009:
‘There has been a massive breakdown of trust: trust in the financial system, trust in bankers, trust in business and business leaders, trust in politicians, trust in the media, trust in the whole process of globalisation — all have been severely damaged, in rich countries and poor countries alike’.
The scientific elites have also been slowly losing public support. This is in part because of the growing number of instances of misplaced certainty about the absence of harm, which has delayed preventive actions to reduce risks to human health, despite evidence to the contrary.
Suddenly, our problems have grown into what Charles W. Churchman in 1967 termed wicked problems — difficult or impossible to solve because of incomplete, contradictory and changing requirements, difficult to recognize, resistant to resolution because of the complexity of their interdependencies and needing to be tackled not by one but via many forms of social power. Solving them requires a new combination of hierarchical power, solidarity and individualism.
What could this mean, for example, for the 100 thousand chemicals currently in commercial use?
To begin with we have more conventions and treaties in place than a decade ago: the 2004 Rotterdam Convention on the Prior Informed Consent (PIC) Procedure covering international trade of 24 pesticides, four severely hazardous pesticide formulations and 11 industrial chemicals; the 2004 Stockholm Convention on Persistent Organic Pollutants to protect human health and the environment from substances which are highly toxic, persistent, bio-accumulative and move long distances in the environment, such as DDT, PCBs, various industrial chemicals, and a set of unintentional chemical by-products such as dioxin. But these conventions only address the top-down hierarchical approach to power.
At the same time Europe has put in place legislation to achieve a global regulatory influence including the EU Cosmetic Directive banning the use of chemicals known or strongly suspected of being carcinogens, reproductive toxins, or mutagens causing cancer, mutation or birth defects; the EU Restriction of Hazardous Substances Directive, which restricts the use of hazardous materials in the manufacture of various types of electronic and electrical equipment including lead, mercury, cadmium, hexavalent chromium, the flame retardents polybrominated biphenyls and polybrominated diphenyl ethers, and which encourages the substitution to safe/or safer alternatives in the electric and electronic equipment industry; the closely linked 2006 EU Waste Electrical and Electronic Equipment Directive for collection, recycling and recovery of electrical goods; the 2006 Strategic Approach to International Chemicals Management (SAICM); and the 2007 EU Registration, Evaluation and Authorisation of Chemicals, widely known as REACH, to assign greater responsibility to industry to manage the risks from chemicals and to provide safety information on substances. The effects of these regulatory tools are described in different chapters, but once again point to the main economic actors rather than communities or individuals.
One thing that has become clearer over the past decade is that certain chemical substances are highly stable in nature and can have long-lasting and wide ranging effects before being broken down into a harmless form. The risk of a stable compound is that it can be bio-accumulated in fatty tissues at concentrations many times higher than in the surrounding environment. Predators, such as polar bears, fish and seals, are known to bio-magnify certain chemicals in even higher concentrations with devastating consequences for both humans and ecosystems. So exposure to toxic chemicals and certain foodstuffs are at risk of causing harm, especially to vulnerable groups such as foetuses in the womb or during childhood when the endocrine system is being actively built. Even with small dose exposures, the consequences can in some instances be devastating with problems ranging from cancer, serious impacts on human development, chronic diseases and learning disabilities. Here the power to act could be more properly set by well-informed individuals and communities.
The relationship between knowledge and power lies at the heart of Volume 2. In many chapters, the implicit links between the sources of scientific knowledge about pollutants, changes in the environment and new technologies, and strong vested interests, both economic and paradigmatic, are exposed. A number of authors also explore in greater depth, the short-sightedness of regulatory science and its role in the identification, evaluation and governance of natural resources, physical and chemical hazards. By creating a better understanding of these normally invisible aspects, it is hoped that this volume will enable communities and people to become more effective stakeholders and participants in the governance of innovation and economic activities in relation to the associated risks to humans and the planet.
Much of what we are able to learn from the histories of past environmental and public health mistakes is also directly applicable to the better regulation and governance of global institutions and financial and economic risks. Robin G. Collingwood argued in his Autobiography (1939), that:
‘History can offer something altogether different from [scientific] rules, namely insight. The true function of insight is to inform people about the present…we study history in order to see more clearly into the situation in which we are called upon to act… the plane on which, ultimately, all problems arise is the plane of ‘real’ life: that to which they are referred for their solution is history.’
In this volume, we go further. Whilst still drawing lessons from such widely accepted tragedies as leaded petrol, mercury poisoning in Japan’s Minamata Bay and older pesticides which sterilised many men who used it, we have ventured into the uncertainties of potential yet contested harm, from genetically modified products; nanotechnologies; chemicals such as Bisphenol A; new pesticides and mobile phones. There is also an examination of the 80 or so potential ‘false positives’ where there had been indications of harm but where it was subsequently claimed that there were in fact no risks to prevent: these cases too can provide information that can help to improve future decision-making about innovation and emerging technologies.
A major part of effective decision-making lies in the way issues are framed. In the case of climate change, the first order question is whether it is worth worrying about at all. US Vice President Al Gore chose to make the question a matter of choice between believers and sceptics. However, problems arose when the public was asked to make a scientific decision when too few people had the qualifications to make any kind of reasoned judgement. They were in fact asked to make a false choice. Instead the question should have been framed around which areas should people and governments make decisions and which should be delegated to experts.
In the end there are few certain and enduring truths in the ecological and biological sciences, nor in the economics, psychologies, sociologies and politics that we use to govern them. One, however, comes from the work of Elinor Ostrom, a late and widely missed colleague, who showed from her work on managing fisheries and ecosystems that complex problems can be solved if communication is transparent and open, visions are shared, trust is high and communities are activated to work from the bottom-up as well as from the top down.
As we navigate the Anthropocene, the epoch named in recognition of our impact on the planet, we will need to encourage more people to become involved in solving the wicked problems of our times. Whether through gathering local information or becoming more aware of the many uncertainties and unpredictabilities in our surroundings, the power structures of knowledge will need to change. And if we are to respond more responsibly to the early warning signals of change, we will need to re-design our style of governance to one which reflects a future defined by the local and specific rather than only the global and the average. We hope that Volume 2 of Late lessons from early warnings with its many lessons and insights can help us all meet such a challenge.
The precautionary principle and false alarms — lessons learned
Lead in petrol ‘makes the mind give way’
Too much to swallow: PCE contamination of mains water
Minamata disease: a challenge for democracy and justice
The impacts of endocrine disrupters on wildlife, people and their environments – The Weybridge+15 (1996–2011) report
Rates of endocrine diseases and disorders, such as some reproductive and developmental harm in human populations, have changed in line with the growth of the chemical industry, leading to concerns that these factors may be linked. For example, the current status of semen quality in the few European countries where studies have been systematically conducted, is very poor: fertility in approximately 40 % of men is impaired. There is also evidence of reproductive and developmental harm linked to impairments in endocrine function in a number of wildlife species, particularly in environments that are contaminated by cocktails of chemicals that are in everyday use. Based on the human and wildlife evidence, many scientists are concerned about chemical pollutants being able to interfere with the normal functioning of hormones, so-called endocrine-disrupting chemicals (EDCs), that could play a causative role in these diseases and disorders. If this holds true, then these ‘early warnings’ signal a failure in environmental protection that should be addressed.
Hormones and sexual differentiation of human behavior
by Akira Matsumoto, 1999.
Sexual difference in the brain has long been one of the more intriguing research areas in the field of neuroscience. This thorough and comprehensive text uncovers and explains recent neurobiological and molecular biological studies in the field of neuroscience as they relate to the mechanisms underlying sexual differentiation of the brain.
Attempts have been made to clarify sex differences in the human brain using noninvasive techniques such as magnetic resonance imaging. Sexual Differentiation of the Brain thoroughly examines these techniques and findings, providing an up-to-date, comprehensive overview written by leading researchers in the field.
Gonadal hormones and sexual differentiation of human behavior: Effects on psychosexual and cognitive development
Melissa Hines is a DES Daughter who has substantial research experience investigating impact of prenatal DES exposure in females and subsequent impact on gender and sexual orientation. She has several books which further investigate these themes of “brain gender”.
The differentiation and dimorphism of gender identity from conception to maturity
Baltimore : Johns Hopkins University Press, 1972 book that combines experimental and clinical data in this report on human development and the relation of sexual differentiation and social roles.
In Man and Woman, Boy and Girl, John Money and Anke Ehrhardt offer a comprehensive account of sexual differentiation using genetics, embryology, endocrinology and neuro-endocrinology, psychology, and anthropology. Their multidisciplinary approach to gender identity avoids the old arguments over nature versus nurture. Money and Ehrhardt focus instead on the interaction of hereditary endowment and environmental influence. Money and Ehrhardt’s work will lead many readers to the conclusion that the differences between man and man, or woman and woman, can be as great as between man and woman.
This was required reading in my human sexuality class in college. I thought it was well presented and researched. It defies some of the gender role and gender identification theories by explaining the gender spectrum in very graphic terms. It will make some people VERY uncomfortable, but it makes a valid point I believe, there are many ways to define gender and how individuals identify with their gender. It does not support the popular theory that we are born genetically predisposed to a particular sexual orientation. Instead the book suggests that regardless of how male or how female you may be genetically you may choose which sex you prefer in your physical or emotional relationships. Blasphemy to some, but it goes a long way to clearing up some of the ambiguity about gender roles and gender identification.
A collection of 57 papers and commentaries, arranged in eight sections, discuss the historical aspects, epidemiology, mechanisms, genetics, etiology, prenatal diagnosis, management, and social aspects of birth defects.
Paperback: 399 pages
Publisher: University Park Press (1977).
Beliefs, Mythology, Magic and Superstition.
Congenital malformations in the past.
A brief history of teratology to the early 20th century.
Epidemiology of Birth Defects.
Classification and nomenclature of morphological defects.
Epidemiologic aspects of the problem of congenital malformations.
Congenital malformations. A report of a study of series of consecutive births in 24 centres. (Extracts).
The incidence of developmental and other genetic abnormalities.
Interrelation of the common congenital malformations. Some aetiological implications.