Freedom from the stigma of oncologic disease: legislative and ethical aspects of the right to be forgotten in oncology

Cancer diagnosis, treatment, and prevention advances have significantly improved European outcomes, but the stigma surrounding cancer survivorship remains challenging. Discrimination against cancer survivors has a negative impact on their quality of life, autonomy, and financial stability. While some European countries have implemented legislation recognizing the “right to be forgotten” for cancer survivors, Italy has no such protective measures. This leaves cancer survivors in Italy susceptible to discrimination based on their medical history. Both the European Union Cancer Plan and the European Parliament resolution stress the importance of safeguarding the rights of cancer survivors and preventing discrimination. Although implementation of legislation at the European level may take time, it is essential that national legislatures, including Italy’s, act quickly. This article explores the issue of discrimination against cancer survivors in Europe, focusing on the specific case of Italy. It examines existing legislative solutions and assesses their effectiveness in addressing discrimination. It also discusses the ethical considerations associated with the “right to be forgotten” in oncology, emphasizing its role in promoting equality and safeguarding the privacy of cancer survivor

Disparities in allele frequencies and population differentiation for 101 disease-associated single nucleotide polymorphisms between Puerto Ricans and Non-Hispanic Whites

BACKGROUND. Variations in gene allele frequencies can contribute to differences in the prevalence of some common complex diseases among populations. Natural selection modulates the balance in allele frequencies across populations. Population differentiation (FST) can evidence environmental selection pressures. Such genetic information is limited in Puerto Ricans, the second largest Hispanic ethnic group in the US, and a group with high prevalence of chronic disease. We determined allele frequencies and population differentiation for 101 single nucleotide polymorphisms (SNPs) in 30 genes involved in major metabolic and disease-relevant pathways in Puerto Ricans (n = 969, ages 45–75 years) and compared them to similarly aged non-Hispanic whites (NHW) (n = 597). RESULTS. Minor allele frequency (MAF) distributions for 45.5% of the SNPs assessed in Puerto Ricans were significantly different from those of NHW. Puerto Ricans carried risk alleles in higher frequency and protective alleles in lower frequency than NHW. Patterns of population differentiation showed that Puerto Ricans had SNPs with exceptional FST values in intronic, non-synonymous and promoter regions. NHW had exceptional FST values in intronic and promoter region SNPs only. CONCLUSION. These observations may serve to explain and broaden studies on the impact of gene polymorphisms on chronic diseases affecting Puerto Ricans.National Institutes of Health, National Institutes on Aging (P01AG02394, P01AG023394-SI); National Insitutes of Health (53-K06-5-10); US Department of Agriculture Research Service (58-1950-9-001, 58-1950-7-707); National Institutes of Health & Heart, Lung, and Blood Institute (U 01 HL72524, Genetic and Environmental Determinants of Triglycerides, HL54776

Universo perdido: Lo bucólico en la moda

Los tiempos de la moda se actualizan y re-inventan, la sociedad refleja sus estados a través de indumentos que definen los cambios que atraviesan y las tendencias sociales que las interponen. El arte y la moda acompañan como signo y símbolo del tiempo. Constituyen el relato latente de los cambios sociales, de las manifestaciones, carencias y preocupaciones de la realidad del mundo. Estos relatos, están muy relacionados a la vida moderna, inquieta, efímera, cambiante, ansiosa, impaciente; que pretende los cambios al igual que las tendencias de forma rápida. No sólo en la variación de los contenidos cuantitativos de la vida, sino también en la potencia que adquiere el atractivo formal de los límites, del comienzo y del final, del llegar y del irse. El sistema de la moda habla de los comportamientos futuros de la sociedad. Así, ante el surgimiento del Cottagecore, la moda actúa como escape a una vida idílica, un mundo ideal solo permitido para unos pocos.The times of fashion are updated and re-invented, society reflects its states through clothing that defines the changes that go through and the social trends that interpose them. Art and fashion accompany time as a sign and symbol. They constitute the latent account of the social changes, of the manifestations, deficiencies and concerns of the reality of the world. These stories are closely related to modern life, restless, ephemeral, changing, anxious, impatient; It aims for changes as well as trends quickly. Not only in the variation of the quantitative contents of life, but also in the power acquired by the formal appeal of limits, of the beginning and the end, of arriving and leaving. The fashion system speaks of the future behaviors of society. Thus, with the emergence of Cottagecore, fashion acts as an escape to an idyllic life, an ideal world only allowed for a few.Os tempos da moda se atualizam e se reinventam, a sociedade reflete seus estados por meio de roupas que definem as mudanças que passam e as tendências sociais que as interpõem. Arte e moda acompanham o tempo como signo e símbolo. Eles constituem o relato latente das mudanças sociais, das manifestações, deficiências e preocupações da realidade do mundo. Essas histórias estão intimamente relacionadas à vida moderna, inquieta, efêmera, mutante, ansiosa, impaciente; Ele visa mudanças e tendências rapidamente. Não apenas na variação dos conteúdos quantitativos da vida, mas também no poder adquirido pelo apelo formal dos limites, do início e do fim, da chegada e da partida. O sistema da moda fala dos comportamentos futuros da sociedade. Assim, com o surgimento da Cottagecore, a moda atua como uma fuga para uma vida idílica, um mundo ideal permitido apenas para alguns

La ley de la atracción. Mensajes ocultos, la simbología en moda como lenguaje identitario

Amulets, relics, talismans, respond to their use in fashion as a decodable and accessible semantic load. In its meaning, it captures groups of users, attracts them, these are sensitive to the symbolic load that certain figurative elements have, identify and are gratified by its use in fashion. This goes beyond the plane of logic / reason and is located, we can say, in a sensitive place, charged with emotionality, magic and mystery. The sign always found its expressive prominence in the history of mankind, and in the history of fashion. These signs loaded with intention, awaken in the future user an irrational component, which enhances a sense of brotherhood in those who wear it. In other words, these garments intervened through: prints, embroidery, accessories; they reveal the latent identity of the brand, its values and identity postulates.Amuletos, reliquias, talismanes, responden a su uso en la moda como una carga semántica decodificable y accesible. En su significado captura a grupos de usuarios, los atrae, estos sensibles ante la carga simbólica que tienen ciertos elementos figurativos, se identifican y se gratifican con su uso en la moda. Esto sobrepasa el plano de la lógica/razón y se ubica, podemos decir, en un lugar sensible, cargado de emocionalidad, magia y misterio. El signo, siempre encontró su protagonismo expresivo en la historia de la humanidad, y en la historia de la moda. Estos signos cargados de intención, despiertan en el futuro usuario la aparición de un componente irracional, el cual potencia un sentido de hermandad en quienes lo portan. Es decir estas prendas intervenidas a través de: estampas, bordados, accesorios; ponen de manifiesto la identidad latente de la marca, sus valores y postulados identitarios.Amuletos, relíquias, talismãs, respondem ao seu uso na moda como uma carga semântica decodificável e acessível. No seu sentido, captura grupos de usuários, atrai-os, estes sensíveis à carga simbólica que certos elementos figurativos possuem, identificam e se gratificam com seu uso na moda. Este ultrapassa o plano da lógica / razão e se situa, podemos dizer, em um lugar sensível, carregado de emoção, magia e mistério. O signo sempre encontrou seu destaque expressivo na história da humanidade e na história da moda. Esses signos carregados de intenção despertam no futuro usuário a aparência de um componente irracional, o que aumenta o sentimento de fraternidade em quem o usa. Ou seja, essas vestimentas intervieram por meio de: estampas, bordados, acessórios; revelam a identidade latente da marca, seus valores e postulados de identidade

Building an Integrated Enhanced Virtual Research Environment Metadata Catalogue

Purpose The purpose of this paper is to boost multidisciplinary research by the building of an integrated catalogue or research assets metadata. Such an integrated catalogue should enable researchers to solve problems or analyse phenomena that require a view across several scientific domains. Design/methodology/approach There are two main approaches for integrating metadata catalogues provided by different e-science research infrastructures (e-RIs): centralised and distributed. The authors decided to implement a central metadata catalogue that describes, provides access to and records actions on the assets of a number of e-RIs participating in the system. The authors chose the CERIF data model for description of assets available via the integrated catalogue. Analysis of popular metadata formats used in e-RIs has been conducted, and mappings between popular formats and the CERIF data model have been defined using an XML-based tool for description and automatic execution of mappings. Findings An integrated catalogue of research assets metadata has been created. Metadata from e-RIs supporting Dublin Core, ISO 19139, DCAT-AP, EPOS-DCAT-AP, OIL-E and CKAN formats can be integrated into the catalogue. Metadata are stored in CERIF RDF in the integrated catalogue. A web portal for searching this catalogue has been implemented. Research limitations/implications Only five formats are supported at this moment. However, description of mappings between other source formats and the target CERIF format can be defined in the future using the 3M tool, an XML-based tool for describing X3ML mappings that can then be automatically executed on XML metadata records. The approach and best practices described in this paper can thus be applied in future mappings between other metadata formats. Practical implications The integrated catalogue is a part of the eVRE prototype, which is a result of the VRE4EIC H2020 project. Social implications The integrated catalogue should boost the performance of multi-disciplinary research; thus it has the potential to enhance the practice of data science and so contribute to an increasingly knowledge-based society. Originality/value A novel approach for creation of the integrated catalogue has been defined and implemented. The approach includes definition of mappings between various formats. Defined mappings are effective and shareable.Published929-9514IT. Banche datiJCR Journa

Optimal consensus control of the Cucker-Smale model

We study the numerical realisation of optimal consensus control laws for agent-based models. For a nonlinear multi-agent system of Cucker-Smale type, consensus control is cast as a dynamic optimisation problem for which we derive first-order necessary optimality conditions. In the case of a smooth penalisation of the control energy, the optimality system is numerically approximated via a gradient-descent method. For sparsity promoting, non-smooth l1-norm control penalisations, the optimal controllers are realised by means of heuristic methods. For an increasing number of agents, we discuss the approximation of the consensus control problem by following a mean-field modelling approach

Patients’ health locus of control and preferences about the role that they want to play in the medical decision-making process

Health locus of control (HLOC) may influence people’s behavior regarding their health as well as their desires to be involved in the medical decision-making. Our study aimed to examine HLOC’s relations with people’s control preferences about the medical decision-making. A total of 153 people filled out the self-administered version of the Control Preference Scale and the Multidimensional Health Locus of Control Scale–form C. The most preferred role is the collaborative one. However, HLOC explained heterogeneity in people’s control preferences: lower scores in external HLOC were related to a greater preference for the active and the collaborative role. From the personalized medicine perspective, an accurate evaluation of the patient’s HLOC could help tailoring the decision-making process within the clinical context

What do people know about the heritability of sleep?

Study Objectives Twin studies have provided data about the relative weight of genetic and environmental factors on sleep variables over the last few decades. However, heritability is a non-intuitive concept and it is often misunderstood even amongst the scientific community. This study aimed to analyze: (1) understanding of the meaning of heritability of insomnia; (2) the accuracy of estimations of heritability in the general population regarding three sleep traits (sleep duration, sleep quality and insomnia); (3) perceptions of the effectiveness of different treatments for insomnia depending on how the disorder is presented (i.e. having an environmental or genetic etiology) and whether the subject’s estimate of genetic influence on sleep traits impacted beliefs about the effectiveness of different treatments. Methods Participants (N = 3658) completed a survey which included: questions about general genetic knowledge; a specific question about the meaning of heritability; estimates of heritability of three different sleep traits; and the effectiveness of different treatments for insomnia depending on how the etiology of this condition was presented. Results Fewer than 25% of the participants selected the correct description of the heritability of insomnia. Almost half of the sample incorrectly believed that heritability refers to the chance of passing a disorder onto their children. We also found that participants provided different estimates for the effectiveness of different treatments depending on the presumed etiology of the disorder. Conclusion Most people do not have accurate knowledge about the concept of heritability. People’s assumptions about the etiology of a disorder may influence which treatments they consider most effective

Sexism Interacts with Patient–Physician Gender Concordance in Influencing Patient Control Preferences: Findings from a Vignette Experimental Design

Background: Patient preferences regarding their involvement in shared treatments decisions is fundamental in clinical practice. Previous evidences demonstrated a large heterogeneity in these preferences. However, only few studies have analysed the influence of patients’ individual differences, contextual and situational qualities, and their complex interaction in explaining this variability. Methods: We assessed the role of the interaction of patient’s sociodemographic and psychological factors with a physician’s gender. Specifically, we focused on patient gender and attitudes toward male or female physicians. One hundred fifty-three people participated in this randomised controlled study and were randomly assigned to one of two experimental conditions in which they were asked to imagine discussing their treatment with a male and a female doctor. Results: Analyses showed an interplay between attitude towards women and the gender of patients and doctors, explaining interindividual variability in patient preferences. Conclusions: In conclusion, patients’ attitudes toward the physicians’ gender constitutes a relevant characteristic that may influence the degree of control patients want to have and the overall patient-physician relationship

Nutrition, Genetic Variation and Male Fertility

Infertility affects nearly 50 million couples worldwide, with 40−50% of cases having a male factor component. It is well established that nutritional status impacts reproductive development, health and function, although the exact mechanisms have not been fully elucidated. Genetic variation that affects nutrient metabolism may impact fertility through nutrigenetic mechanisms. This review summarizes current knowledge on the role of several dietary components (vitamins A, B12, C, D, E, folate, betaine, choline, calcium, iron, caffeine, fiber, sugar, dietary fat, and gluten) in male reproductive health. Evidence of gene-nutrient interactions and their potential effect on fertility is also examined. Understanding the relationship between genetic variation, nutrition and male fertility is key to developing personalized, DNA-based dietary recommendations to enhance the fertility of men who have difficulty conceiving