La mise en œuvre d'une démarche éthique peut-elle influencer la souffrance des soignants?

Pour un soignant, la question éthique fondamentale est celle de l’attention à l’autre, en tant que sujet singulier et non pas en tant qu’objet de soins. Dans la pratique, sa mise en œuvre ne permet pas — et c’est heureux — de dispenser le soignant d’un questionnement quant à sa propre manière d’être sujet et de s’engager dans le soin. Cet article relate l’expérience d’un atelier d’aide à la décision éthique, en montrant qu’une démarche éthique peut aider les soignants à trouver un juste milieu dans leur engagement, évitant à la fois l’épuisement et l’indifférence, tous deux signes de souffrance. Les réponses à une enquête menée auprès des soignants qui participent régulièrement à cet atelier mettent en évidence différents éléments qui influencent favorablement leur bien-être et la qualité de leur présence, en faisant de l’écoute de soi un préalable à l’écoute de l’autre. Une seconde expérience, celle de la création et de l’utilisation d’un outil d’apprentissage du raisonnement éthique, confirme cette influence positive. La conscience apportée à la dimension éthique de notre travail nous aide ainsi à comprendre la nécessité de poser, seconde après seconde, des choix conscients et de les incarner dans les moindres de nos gestes. Elle montre que le sens de nos actions est à chercher, non pas seulement dans le contenu des décisions à prendre, mais également dans la manière dont nous les prenons et les mettons en œuvre. En cela, elle nous permet d’éprouver quotidiennement qu’en construisant les meilleures décisions possibles pour les patients, nous nous construisons en tant que soignants. C’est toute une philosophie de la transmission qui est alors à l’œuvre.[Can the implementation of ethical processes have an influence on medical persons' suffering?] The fundamental ethical question for medical staff is that of the attention to the other as a singular subject and not as the object of care. In practice, its implementation does not allow — fortunately — to exempt the medical staff from questioning their own way of being a subject and of becoming involved in care. The article relates the experience of an “assistance to ethical decision-making” workshop, showing that ethical processes can help medical staff find a middle way in their commitment, avoiding exhaustion as well as indifference, which are both signs of suffering. Answers to a survey among medical staff who regularly take part in the workshop clearly emphasize several elements that favourably influence their well-being and the quality of their presence, making self-attention a preliminary to attention to the other. A second experience, the creation and use of a learning tool for ethical reasoning, confirms that positive influence. Being conscious of the ethical dimension of our work helps us understand, second after second, the need of making conscious choices and making them come true in every single gesture. It shows that the meaning of our actions is not only to be sought in the content of our decisions but also in the way we take and implement them. As such, it allows us daily to feel that building the best possible decisions for the patients enables us to build ourselves as medical persons. It is a whole philosophy of transmission which is then at work

Sexualidade e deficiência intelectual: narrativas de pais de adolescentes Sexuality and intellectual handicap: parents' narratives

Pelo senso comum, adolescentes com deficiência intelectual têm a sexualidade exacerbada ou são assexuados. Para conhecer como vivenciam as manifestações sexuais de seus filhos, entrevistamos 14 pais de adolescentes com essa deficiência. A análise das narrativas obtidas foi baseada em autores da antropologia. Nelas, observaram-se os preconceitos e o desconhecimento sobre o tema, bem como a reprodução da ideologia de gênero da nossa sociedade. Nas narrativas dos pais de adolescentes do sexo masculino, a masturbação, a relação sexual e o medo de abuso sexual foram destaques, enquanto nas dos pais das adolescentes privilegiaram-se como tema as mudanças corporais e também o receio de que fossem abusadas sexualmente. A inadequação entre desenvolvimento físico e um comportamento sexual considerado socialmente impróprio também foi alvo de narrativas. Aponta-se a necessidade de ampliação do debate com os adolescentes, seus pais e diversos setores da sociedade para minimizar os preconceitos em relação à sexualidade das pessoas com deficiência intelectual, propiciando a garantia de seus direitos sexuais.<br>By common sense, adolescents with intellectual disabilities have a heightened sexuality or are asexual. To learn how they experience the sexual manifestations of their children, we interviewed 14 parents of adolescents with this deficiency. The analysis of the narratives obtained was based on authors of anthropology. In them, there were prejudices and ignorance on the subject, as well as playing the gender ideology of our society. In the narratives of parents of adolescent males, masturbation, sex and fear of sexual abuse were highlighted, while parents privileged themes such as bodily changes and also the fear that they were sexually abused. The mismatch between physical development and sexual behavior considered socially improper was also the target of narratives. The paper points up the need to expand the discussion with teens, their parents and various sectors of society to minimize biases regarding sexuality of people with intellectual disabilities, providing a guarantee of their sexual rights

An integrated encyclopedia of DNA elements in the human genome.

The human genome encodes the blueprint of life, but the function of the vast majority of its nearly three billion bases is unknown. The Encyclopedia of DNA Elements (ENCODE) project has systematically mapped regions of transcription, transcription factor association, chromatin structure and histone modification. These data enabled us to assign biochemical functions for 80% of the genome, in particular outside of the well-studied protein-coding regions. Many discovered candidate regulatory elements are physically associated with one another and with expressed genes, providing new insights into the mechanisms of gene regulation. The newly identified elements also show a statistical correspondence to sequence variants linked to human disease, and can thereby guide interpretation of this variation. Overall, the project provides new insights into the organization and regulation of our genes and genome, and is an expansive resource of functional annotations for biomedical research