RESUMO
Genetic tests can detect the predisposition to various diseases. The demand for gene diagnostics and corresponding prophylactic measures is increasing steadily. In the German healthcare system, however, legal uncertainties exist as to whether a mere risk of disease is reason enough to bear the costs for prophylactic measures. When medically effective prophylactic measures are available in certain cancer diseases, such as in hereditary breast cancer, the current practice of deciding in individual cases appears to be insufficient.The fact that persons with a high or very increased risk of breast cancer are precluded from a standard care procedure raises questions concerning ethical justification as well as medical plausibility. Moreover, it is remarkable that the statutory healthcare system treats persons at risk differently. In some cases there is a regulated way of reimbursement for preventive measures for persons at risk (factor V Leiden mutation) and in other cases there are only case-by-case decisions. Finally, in light of social regulations for persons at high and very increased risk this article considers the need of optimization regarding the risk communication in the decision-making process and the crucial question of budgetary impact for the German healthcare system.From a medical, ethical and legal perspective, a social regulation for persons at high and very increased risk of disease is inevitable and the consequences should be discussed in advance.
Assuntos
Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Predisposição Genética para Doença/genética , Predisposição Genética para Doença/prevenção & controle , Testes Genéticos/economia , Comunicação Interdisciplinar , Direitos do Paciente , Neoplasias da Mama/economia , Detecção Precoce de Câncer/economia , Detecção Precoce de Câncer/ética , Feminino , Testes Genéticos/ética , Testes Genéticos/legislação & jurisprudência , Alemanha , Humanos , Direitos do Paciente/ética , Direitos do Paciente/legislação & jurisprudência , Mastectomia Profilática/economia , Mastectomia Profilática/ética , Mastectomia Profilática/legislação & jurisprudênciaRESUMO
Currently it is not clear, whether and which specific prophylactic measures the healthcare system should provide as a standard offer for persons with genetic risks. Furthermore, there is no theoretical model for transparent regulation in this context. In the concrete case of BRCA1/2 carriers, the consequences of these defects become obvious: requests for medical measures are subjected to decision-making procedures of health insurance companies that are not wholly transparent. Against the background of medical advance in relation to complex diseases and in order to address this problem of the healthcare system, this article develops a healthy-sick model. This model gives a frame for identifying the medical demand of persons at risk of genetic diseases and for classifying the status of the persons concerned in the healthcare system.
Assuntos
Gerenciamento Clínico , Predisposição Genética para Doença/genética , Programas Nacionais de Saúde , Proteína BRCA2/genética , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Análise Mutacional de DNA , Feminino , Triagem de Portadores Genéticos , Alemanha , Necessidades e Demandas de Serviços de Saúde , Humanos , Revisão da Utilização de Seguros , Fatores de Risco , Ubiquitina-Proteína Ligases/genéticaRESUMO
OBJECTIVE: Individuals with chronic obstructive pulmonary disease (COPD) exhibit low physical and mental health-related quality of life (HRQL) and high susceptibility to disability. We investigated the influence of psychological factors on HRQL and disability in COPD individuals recruited from the general population. In line with Leventhal's common sense model, we expected psychological factors to be associated with HRQL and disability even after controlling for medical status. METHODS: Individuals with COPD (n = 502; 59.7 years old; GOLD grades were I: 3%, II: 17%, III: 34%, IV: 46%) were assessed through an online survey administered via COPD patient organisations in Germany. Individuals filled in the Short Form Health Survey (SF-12), COPD Assessment Test, Patient Health Questionnaire (modules: GAD-2, PHQ-15, PHQ-9), Brief Illness Perception Questionnaire, a questionnaire that assesses causal illness attributions, and the internal illness-related locus of control scale of the 'KKG questionnaire for the assessment of control beliefs about illness and health'. Multiple linear regressions were calculated. RESULTS: The investigated factors explained high variances (disability = 56%, physical HRQL = 28%, mental HRQL = 63%, p ≤ .001). Better mental health, more optimistic illness perceptions, attribution to psychological causes, and stronger internal locus of control were associated with lower disability and better HRQL. Comorbid somatic symptoms contributed to high disability and low quality of life. CONCLUSION: Psychological factors, such as illness perception, attribution and internal locus of control, were associated with disability and HRQL. These factors should be considered when designing treatments for individuals with COPD, and adequate interventions should be provided to enhance illness understanding and self-management skills.
Assuntos
Atitude Frente a Saúde , Pessoas com Deficiência/psicologia , Nível de Saúde , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Pessoas com Deficiência/estatística & dados numéricos , Feminino , Alemanha/epidemiologia , Inquéritos Epidemiológicos , Humanos , Controle Interno-Externo , Masculino , Saúde Mental , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: While numerous studies highlight the relevance of socio-cultural factors influencing incidence and prevalence of obesity, only a few address how obese people perceive causes and prevention of or intervention for obesity. This study contributes to a more thorough understanding of subjective aetiologies and framing themes for a mainly understudied but promising field. Thus it may serve for the development of effective public health strategies to combat obesity. METHODS: Autobiographically based in-depth interviews were conducted with 20 patients (adolescents and young adults) institutionalised in the obesity rehabilitation centre INSULA in Bischofswiesen (Germany). The data were analysed with Atlas.ti with regard to two main perspectives: (1) How the interviewees perceive 'their' obesity from a subjective point of view and (2) which conclusions they draw from their own 'story' concerning prevention/intervention strategies. RESULTS: The interviewees did not indicate a clear starting point for their overweight. Nevertheless, certain life-events (e.g. divorce or illness of parents) were identified as catalysing weight gain. As a consequence of coping with distress, body weight rises rapidly and not continuously. Obesity was generally framed as a problem primarily located within the family and not in the wider environment. Corresponding to this, the family was identified as the main and most important addressee of preventive measures. The interviewees highlighted the importance of personal responsibility as a prerequisite for self-determined action against obesity, but denied any link between responsibility and guilt. CONCLUSIONS: This study contributes substantially to a broader perspective on the prevention of obesity. First, more attention has to be paid to the interactions of medical aspects and the social dimension of obesity. Second, prevention efforts should be more aware of the relevance of subjective aetiology when it comes to the definition of reasonable and effective governance strategies in tackling obesity. Third, current assumptions concerning the importance of personal responsibility for obesity prevention might underestimate the relevance of self-determined action of the obese.
Assuntos
Comportamento do Adolescente/psicologia , Obesidade Mórbida/prevenção & controle , Obesidade Mórbida/psicologia , Programas de Redução de Peso/organização & administração , Adolescente , Adulto , Comorbidade , Depressão/epidemiologia , Pesquisa Empírica , Feminino , Alemanha/epidemiologia , Educação em Saúde/organização & administração , Humanos , Acontecimentos que Mudam a Vida , Masculino , Obesidade Mórbida/epidemiologia , Prevalência , Pesquisa Qualitativa , Fatores de Risco , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Aumento de Peso , Adulto JovemRESUMO
Biotechnological and life science innovations do not only lead to immense progress in diverse fields of natural science and technical research and thereby drive economic development, they also fundamentally affect the relationship between nature, technology and society. Taken this seriously, the ethical and societal assessment of emerging biotechnologies as for example synthetic biology is challenged not only to constrain on questions of biosafety and biosecurity but also to face the societal questions within the different fields as an interface problem of science and society. In order to map this vague and stirring field, we propose the concept of bio-objects to explore the reciprocal interaction at the interface of science and society serious as well to have the opportunity to detect possible junctions of societal discontent and unease before their appearance.
RESUMO
Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate in such research. In this article, ethical frameworks stressing the societal value of low-privacy expectations in order to secure biomedical research are discussed. It will turn out that neither utilitarian nor communitarian or classical libertarian ethics frameworks will help to serve both goals. Instead, John Rawls' differentiation of the "right" and the "good" is presented in order to illustrate the possibility of "serving two masters": individual interests of privacy, and societal interests of scientific progress and intergenerational justice. In order to illustrate this counterbalancing concept with an example, the five-pillar concept of the German Ethics Council will be briefly discussed.
RESUMO
BACKGROUND: Stigmatizing attitudes towards obese people are common in the public. Based on findings that portrayals of obesity in entertainment media foster weight-related stigmatization, the goal of the current study was to analyze media coverage of obesity in daily newspapers. METHODS: For the year 2006, all 1,563 issues of five high-circulation daily newspapers (two national newspapers, one tabloid newspaper, and two local newspapers) in Germany were systematically searched for obesity-related terms. Out of these issues, 222 articles about human overweight were identified and subjected to a quantitative content analysis using a reliable coding system. RESULTS: The national and local newspapers examined offered more comprehensive and less incorrect information about obesity than the tabloid newspaper. Compared with the other types of papers, the information about obesity in the local papers was less negative and less catastrophizing. The national newspapers presented more attributions of obesity to internal, controllable causes than the other newspaper types, and the tabloid newspaper used more personalized descriptions of cases with extreme features. CONCLUSION: The current coverage of obesity in daily newspapers may contribute to stigmatization. Future research should examine readers' reception of newspaper information and potential destigmatization through more precise and less subjective coverage of obesity.
Assuntos
Jornais como Assunto , Obesidade/psicologia , Estereotipagem , Alemanha , Educação em Saúde , Humanos , Disseminação de Informação , Obesidade/etiologia , Obesidade/terapiaRESUMO
The primary prevention of childhood obesity requires combined efforts by stakeholders at various societal levels, based on the knowledge from multiple disciplines. The goal of the present study was therefore to analyze current preventive approaches and delineate implications for future prevention research and practice by integrating knowledge from genetics, law, economics, psychology, and social ethics. Inconclusive evidence on the etiology of obesity, a complex, multifactorial condition, likely complicates prevention, leading to a lack of specificity regarding target groups, focus, and techniques. It is recommended to increase the specificity of prevention by explicitly considering risk factor evidence, including evidence on genetic factors. Because the institutional and legal framework of primary obesity prevention in children is insufficient in many countries, considering the risk factors for childhood obesity is also crucial for establishing a basis for legal regulations. Companies from sectors concerned with food intake and physical activity may be involved in preventive action, e.g., for initiating self-defeating sanctions. Long-term behavior change may be enhanced through the systematic application of behavior modification techniques within primary prevention programs. Overall, an interdisciplinary perspective furthers understanding of the complexity of this condition and can inform public health strategies on the primary prevention of childhood obesity.
Assuntos
Promoção da Saúde/legislação & jurisprudência , Legislação como Assunto/tendências , Obesidade/epidemiologia , Obesidade/prevenção & controle , Equipe de Assistência ao Paciente , Criança , Europa (Continente)/epidemiologia , Humanos , Fatores de RiscoRESUMO
The primary prevention of adult obesity requires combined efforts by stakeholders at various societal levels, based on the knowledge from multiple disciplines. The goal of the present study was, therefore, to analyze current preventive approaches and delineate implications for future prevention research and practice by integrating knowledge from genetics, law, economics, psychology, and social ethics (Figure 1). Inconclusive evidence on the etiology of obesity, a complex, multifactorial condition, likely complicates prevention, contributing to a lack of specificity regarding target groups, focus, and techniques of prevention. Given the urgency and significance of the "obesity problem" that requires immediate and effective solutions, it is recommended that the various existing and developing prevention programs are evaluated to ensure orientation at current risk factor research. Results from genetic risk factor research can be used as a rationale to increase specificity of preventive measures regarding identification of high-risk groups, timing, and goals of prevention. Further, it is important to evaluate prevention programs for systematic application of behavior modification techniques and consideration of individual risk factors and resources to ensure promotion of long-term behavior change that leads to weight maintenance and a reduction of incidence rates of obesity in adults (Figure 3). Although the primary prevention of childhood obesity may lead to a reduction of incidence rates of obesity in adults, high rates of adult-onset obesity and the related medical and psychosocial sequelae in adulthood underscore the necessity of preventive efforts for adults. Concerning the environmental basis of obesity prevention, in many countries, the institutional and legal framework of preventive approaches requires further examination in order to improve funding, coordination between multiple stakeholders, and implementation of prevention in the health-care system. Evidence on risk factors for obesity is also crucial to inform network approaches and to justify restrictive legal options for the purpose of prevention. Here, self-defeating sanctions of the relevant industries may be a viable first step toward obesity prevention. As taxes or subsidies are limited in feasibility (Figure 2), relevant industries could be involved in the design and promotion of "healthy" products, stimulating greater request of such products. Network approaches appear suited to involve companies and other relevant stakeholders of prevention efforts on adult obesity. Yet these approaches require greater societal conscience about the severity of the obesity problem in adults and its multifactorial etiology. Recognizing the multifactorial etiology of obesity and acknowledging that weight regulation is only somewhat within personal responsibility may therefore lead to destigmatize obese individuals as the focus is shifted away from blaming them toward a more realistic understanding of this condition. Responsibility for the development of obesity and the prevention of weight gain is in multiple areas: law, policy, industry, health-care institutions, medical professions, and the individual - all should contribute to obesity prevention. Overall, the current analysis shows that an interdisciplinary perspective furthers understanding of the complexity of this condition and can inform public-health strategies on the prevention of adult obesity.