Public perceptions of genomic studies and hereditary diseases in Aari community, South Omo Zone, Ethiopia.

BACKGROUND: Genetic and genomic research is revolutionizing precision medicine; however, addressing ethical and cultural aspects is crucial to ensure ethical conduct and respect for community values and beliefs. This study explored the beliefs, perceptions and concerns of the Aari community in South Ethiopia regarding genetic concepts, hereditary diseases and ethical research practices related to sample collection, storage and sharing. METHODS: In-depth interviews and focus group discussions were conducted with community elders, health officials, tuberculosis patients and apparently healthy individuals. Data were thematically analysed using MAXQDA software. RESULTS: Participants identified diseases such as podoconiosis, leprosy, goitre and epilepsy as hereditary and perceived some as 'curses' due to generational impact and social stigma. Disease susceptibility was attributed to divine intervention or factors such as malnutrition and sanitation. Although hereditary diseases were considered unavoidable, in some cases environmental factors were acknowledged. Participants shared personal examples to demonstrate inheritance concepts. Blood held cultural significance, and concerns about its potential misuse resulted in scepticism towards giving samples. CONCLUSIONS: This study emphasizes the significance of comprehending local beliefs and perceptions and stresses the need to establish effective communication, build trust and address underlying causes of hesitancy to improve recruitment and ensure ethical conduct.

An exploration of health, family and economic experiences of leprosy patients, Iran.

This study aims to explore the life experiences of Iranian leprosy patients in health, family and economic dimensions. Mycobacterium leprae is responsible for leprosy, a type of chronic inflammatory disease that existed from ancient times, still hearing the name of leprosy creates an awful imagination of cutting the organ, blindness and isolation and it has still remained as a serious social problem. The patients are confronted with particular problems physically and mentally. The phenomenological tradition was used to gain knowledge of the leprosy patients lived experiences. Data analysis method was based on Colaizzi's approach. This is a qualitative research using purposeful sampling, interviewing the leprosy patients referring to a contagious diseases department of the Health Network of Nourabad Lorestan City. Data were collected by interviews those were analyzed in Colaizzi's Methods to extract the conceptual codes. Some concepts obtained from the analysis of data in the study such as physical, psychological, social, family, economic experiences, cultural beliefs of society, the context for tendency toward defect and disability and social stigma. These findings suggest that health care professionals should pay attention not only to leprosy patients to reduce their physical and psychological but also to the community and public culture to reduce the leprosy patients suffering from social stigma. The results of the present study can help us in a better understanding of all aspects of patients' lived experiences.

[From The Origin of Species to Artenes Oprindelse]. / Fra the origin of species til Arternes Oprindelse. Litt om darwinismens utbredelse i Norge i det 19. århundre.

The Origin of Species, Charles Darwin's most important work, was published in London in 1859. The first presentation in Norway, by P. Chr. Asbjørnsen, appeared in the journal Budstikken. About 30 years passed before it was translated into Norwegian, and it took some time before Darwin's theories were debated in Norway. The zoologist Michael Sars introduced them in the Scientific Society in Christiania (i.e., Oslo) in 1869, but he was not met with a great deal of interest. However, a new generation of scientist saw this differently, mainly the botanist Axel Blytt, the zoologist G.O. Sars and the geologist W.C. Brøgger. Two prominent professors of medicine were also involved in the debate, on different sides. The Darwinist Gerhard Henrik Armauer Hansen, who discovered the lepra bacillus, wrote several books and articles about Darwinism, while Professor Ernst Ferdinand Lochmann, though admiring Darwin as a prominent naturalist, strongly rejected Darwinism as a scientific theory.

Socio-cultural dimensions of leprosy in north-western Botswana.

A study to determine some socio-cultural factors influencing knowledge and attitudes of the community toward leprosy was carried out in north-western Botswana, where cases of leprosy have been known to exist over the years. The study was largely qualitative, using ethnographic approaches. The research was tailored in a way to capture the ethnic diversity of the region, in particular two ethnic groups, namely Bayei and Bambukushu. The name or symptom complex associated with leprosy was 'ngara' or 'lepero' and this was associated with bad blood. Knowledge on disease causation was lacking, which in turn influenced health seeking behaviour of patients. Patients were well integrated and accepted into the social structure of communities. Women caring for these patients did experience some additional burden and identified time as their major constraint in caretaking. It was apparent that the degree of rejection correlated with seriousness of the disease and extent of disabilities and dysfunction. The present pattern of health seeking behaviour needs to be altered, so that an early diagnosis can be made at the health facility. This will aid appropriate management and prevent occurrence of deformities and disabilities, which in turn will reduce rejection and isolation of patients. Education of community, patients, traditional and religious healers on various aspects of the disease, especially causation, is essential to achieve a change in the health seeking behaviour.

Estigma y lepra / Stigma and leprosy

El objetivo de este travajo muldisciplinario es estudiar el estigma del enfermo de lepra y sus connotaciones psicológicas y sociales. Su principal fundamento es "Estigma", de Goffman. El método ha consistido en ir de lo general a lo particular, o sea del estudio del estigma en general al estudio del estigma en lepra, dando ejemplos concretos. Los resultados obtenidos fueron: El estigma en lepra posee cuatro componentes: físico, psíquico, moral y social. El enfermo no cumple con las normas de identidad impuestas por la sociedad y es rechazado. Los enfermos forman un característico endogrupo. La lepra es una interferencia en al comunicación con los demás. El estigma es contagioso. La perceptibilidad es una característica fundamental del hanseniano. El enfermo recorre a una "carrera moral" en la cual influye notablemente la internación en un establecimiento específico. Se encubre para manejar la información sobre él mismo, utilizando técnicas de control de la información. El paciente sufre ambivalencia respecto a sí mismo y a su grupo. En conclusión esta investigación ayuda a encarar integralmente el tratamiento de hanseniano, pues tiene en cuenta sus aspectos somáticos, mentales y sociales

Estigma y lepra / Stigma and leprosy

El objetivo de este travajo muldisciplinario es estudiar el estigma del enfermo de lepra y sus connotaciones psicológicas y sociales. Su principal fundamento es "Estigma", de Goffman. El método ha consistido en ir de lo general a lo particular, o sea del estudio del estigma en general al estudio del estigma en lepra, dando ejemplos concretos. Los resultados obtenidos fueron: El estigma en lepra posee cuatro componentes: físico, psíquico, moral y social. El enfermo no cumple con las normas de identidad impuestas por la sociedad y es rechazado. Los enfermos forman un característico endogrupo. La lepra es una interferencia en al comunicación con los demás. El estigma es contagioso. La perceptibilidad es una característica fundamental del hanseniano. El enfermo recorre a una "carrera moral" en la cual influye notablemente la internación en un establecimiento específico. Se encubre para manejar la información sobre él mismo, utilizando técnicas de control de la información. El paciente sufre ambivalencia respecto a sí mismo y a su grupo. En conclusión esta investigación ayuda a encarar integralmente el tratamiento de hanseniano, pues tiene en cuenta sus aspectos somáticos, mentales y sociales (AU)

Community leaders involvement in leprosy health education.

As an alternative approach, 310 community leaders consisting of village political leaders, school teachers, Govt. staff, members of socio-welfare and religious agencies, graduate students and traders from 21 villages of Chingleput district of Tamilnadu (India) were interviewed to explore the possibilities of their involvement in leprosy health education community. Though majority (76%) of respondents were not fully aware about various aspects of leprosy and showed negative reactions (51%) towards leprosy patients; almost all realised the importance of educating community about leprosy for its early control, for which a large majority (88%) of them had expressed their willingness to participate in leprosy health education and control programme by devoting an average of 4.4 +/- 5.4 hours per week. A good number (54%) of them had also been educating people about leprosy in one or the other way. The leaders who had been exposed to leprosy health education especially in recent past, were significantly better equipped with knowledge about leprosy and its control and were much more willing to participate in NLCP, than others. Study concluded that if the community leaders are approached, educate and motivated properly, they would certainly involve themselves to provide a valuable strength to our leprosy health education and control programme.

Community awareness about leprosy and participation in National Leprosy Control Programme.

To evaluate the health education component of our National Leprosy Control Programme (NLCP), 955 adult community members and 225 adult leprosy patients were interviewed with a view to assess their awareness about leprosy and participation in NLCP. The early signs/symptoms of leprosy were poorly perceived by the community. Majority of the community (81%) and patients (75%) were unaware or held superstitious ideas about causation of leprosy. The spread of disease through close contact with patient(s) was better known to the community (65%) than the patients (45%); but the role of open cases in spread was stressed by more patients (17%) than community (5.5%). About 31% community and 23% patients had no idea about the ways to prevent leprosy spread. As against 89% patients, only 62% community believed in curability of leprosy with early and regular treatment; but 20% of the community members did not know where to refer patients for treatment. The causation and prevention of deformities were poorly perceived by 71% patients, and likewise 62% of the patients did not take precaution(s) to prevent the deformities. About 32% respondents were unaware of the efforts being made to control leprosy; and their (79-84% respondents) participation in NLCP was very vague. About 44% community members showed prejudice towards leprosy. The NLCP infra-structure and mass media could not educate community effectively. The implications of the findings are discussed in this paper.