Purpose: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues raised by research investigating personalized genomic medicine. Methods: The abstracts of 953 articles extracted from scholarly databases and published during a 5-year period were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. Results: ELSI analyses were published in both scientific and ethics (...) journals. Investigational research comprised 45% of the literature reviewed and the remaining 55% comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations. Conclusion: Considering that strategies in personalized medicine increasingly target individuals’ unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community. (shrink)
Technology has outpaced the capacity of researchers performing research on human participants to interpret all data generated and handle those data responsibly. This poses a critical challenge to existing rules governing human subjects research. The technologies used in research to generate images, scans, and data can now produce so much information that there is significant potential for incidental findings, findings generated in the course of research but beyond the aims of the study. Neuroimaging scans may visualize the entire brain and (...) even the entire head; computed tomography colonography research may visualize the entire torso, from the base of the lungs to the pubis; genetics studies may reveal “extra” and sometimes unwanted information about the family, such as misattributed paternity and undisclosed adoption; and genomic microarray research increasingly involves whole-genome analysis revealing an individual’s complete genotype, with enormous potential for uncovering unexpected information about an individual’s genetics and risks of developing future conditions. (shrink)
Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation (...) of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data, ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: The role of HDSSs in research using public health data and data-sharing; Ownership and funding are critical factors influencing data-sharing; Other factors discourage data-sharing; Promoting and sustaining data-sharing; Ethical guidance structures; and Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default. (shrink)
Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally lower protective ethico-legal frameworks of (...) the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South. (shrink)
ABSTRACTFeelings and cognitions influence judgment through attribution. For instance, the attribution of positive feelings and cognitions to a stimulus leads to a positive judgment of that stimulus. We examined whether misattribution is moderated by the applicability of a distractor to the judgment question. For instance, when are people more likely to attribute to a target person the affective and cognitive experiences triggered by a kitten – when trying to judge the person’s cuteness or trustworthiness? The kitten triggers experiences specifically relevant (...) to cuteness, but people might more easily suspect the kitten’s potential influence when judging cuteness rather than trustworthiness. Using the Affect Misattribution Procedure, we found that applicability increases the effect of misattribution on valenced judgments. The results emphasise the importance of specific information in attribution and suggest that high applicability of distractors to the judgment question d... (shrink)
El proceso de la civilización conlleva la domesticación de las funciones naturales, en especial de las excrementicias, y la exclusión del lenguaje que sirve para nombrarlas. Cuando la élite ilustrada está logrando estos objetivos, surge la Canción cantable de García Tejada, largo poema en torno a los excrementos. Con base en tres teóricos, nos proponemos estudiar las dos dimensiones de la risa en esta obra. Por un lado, la cara crítica, que parodia y desmitifica los discursos serios de la época (...) y su artificioso lenguaje. Por otro lado, la faz regeneradora, que recrea elementos de la cultura popular para luchar por un mundo libre e igualitario. En la conclusión, relacionamos el poema con la tradición de la sátira menipea, lo que subraya la importancia y originalidad de este olvidado poeta. (shrink)
ABSTRACTAfter co-occurrence of a neutral conditioned stimulus with an affective unconditioned stimulus, the evaluation of the CS acquires the US valence. This effect disappears when infor...
The Straniak Philosophy Prize 1995 awarded by the Hermann and Marianne Straniak Foundation Sarnen/Switzerland This book explores Eastern and Western ideas of freedom and reveals the essential differences, as well as similarities, between Eastern and Western cultural values. Inspired by an ancient Greek myth recounted by Protagoras, the authors suggest that three important values tend to motivate human activity: achieving pleasure, achieving results, and obeying moral law. Then, drawing on intellectual sources ranging from traditional Hinduism to modern existentialism, the authors (...) proceed to show how these values - pleasure, efficiency, and morality - determine the idea of freedom as it appears in various philosophical systems of East and West. In the course of their analysis, the idea of freedom is itself emancipated from the usual kinds of cultural boundaries that have so often limited both its usefulness and its timeliness. (shrink)
This study explored the influence of the COVID-19 pandemic on perceived health behaviors; physical activity, sleep, and diet behaviors, alongside associations with wellbeing. Participants were 1,140 individuals residing in the United Kingdom, South Korea, Finland, Philippines, Latin America, Spain, North America, and Italy. They completed an online survey reporting possible changes in the targeted behaviors as well as perceived changes in their physical and mental health. Multivariate analyses of covariance on the final sample revealed significant mean differences regarding perceived physical (...) and mental health “over the last week,” as well as changes in health behaviors during the pandemic by levels of physical activity and country of residence. Follow up analyses indicated that individuals with highest decrease in physical activity reported significantly lower physical and mental health, while those with highest increase in physical activity reported significantly higher increase in sleep and lower weight gain. United Kingdom participants reported lowest levels of physical health and highest increase in weight while Latin American participants reported being most affected by emotional problems. Finnish participants reported significantly higher ratings for physical health. The physical activity by country interaction was significant for wellbeing. MANCOVA also revealed significant differences across physical activity levels and four established age categories. Participants in the oldest category reported being significantly least affected by personal and emotional problems; youngest participants reported significantly more sleep. The age by physical activity interaction was significant for eating. Discussed in light of Hobfoll conservation of resources theory, findings endorse the policy of advocating physical activity as a means of generating and maintaining resources combative of stress and protective of health. (shrink)
A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. A review of the same nine journals was conducted (...) for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. Of the total number of original papers published in the nine bioethics journals, 18.1% collected and analysed empirical data. Journal of Medical Ethics and Nursing Ethics led the empirical publications, accounting for 89.4% of all empirical papers. The former published significantly more quantitative papers than qualitative, whereas the latter published more qualitative papers. Our analysis reveals no significant difference between the proportion of empirical papers published in 2004–2009 and 2010–2015. However, the increasing empirical trend has continued in these journals with the proportion of empirical papers increasing from 14.9% in 2004 to 17.8% in 2015. This study presents the current state of affairs regarding empirical research published nine bioethics journals. In the quarter century of data that is available about the nine bioethics journals studied in two reviews, the proportion of empirical publications continues to increase, signifying a trend towards empirical research in bioethics. The growing volume is mainly attributable to two journals: Journal of Medical Ethics and Nursing Ethics. This descriptive study further maps the still developing field of empirical research in bioethics. Additional studies are needed to completely map the nature and extent of empirical research in bioethics to inform the ongoing debate about the value of empirical research for bioethics. (shrink)
As a result of the COVID-19 pandemic people have endured potentially stressful challenges which have influenced behaviors such as eating. This pilot study examined the effectiveness of two brief interventions aimed to help individuals deal with food cravings and associated emotional experiences. Participants were 165 individuals residing in United Kingdom, Finland, Philippines, Spain, Italy, Brazil, North America, South Korea, and China. The study was implemented remotely, thus without any contact with researchers, and involved two groups. Group one participants were requested (...) to use daily diaries for seven consecutive days to assess the frequency of experience of their food cravings, frequency of giving in to cravings, and difficulty resisting cravings, as well as emotional states associated with their cravings. In addition to completing daily food diaries, participants in group two were asked to engage in mindful eating practice and forming implementation intentions. Participants assessed their perceived changes in eating, wellbeing, and health at the beginning and end of the intervention. Repeated measures MANOVAs indicated that participants experienced significantly less food cravings, as well as lower intensities of unpleasant states associated with cravings across time. In contrast to our hypothesis, the main effects of the group were not significant. Participants reported less eating and enhanced wellbeing at the end of the study. Our findings can be used to inform future remote interventions to manage food cravings and associated emotions and highlight the need for alternative solutions to increase participant engagement. (shrink)
As the largest labour flow in human history, the recent rise in migration in China has opened up unprecedented opportunities for millions of Chinese to rearrange their lives. At the same time, this process has also posed great challenges to Chinese migrants, especially female migrants, who not only face a bias against ‘outsiders’ but also have a greater need for reproductive health-related services in their migratory destinations. Based on data collected via multiple sources in Shanghai, China’s largest metropolis, this study (...) profiles the changing characteristics of female migrants, presents data on self-reported symptoms of reproductive health-related problems and knowledge on reproductive health issues, compares maternal and child health measures between migrants and local residents, and examines factors related to reproductive health knowledge and migrants’ access to health care in urban china. Results of this study show a relatively low level of self-reported reproductive health problems among female migrants, coupled with a relatively high level of ignorance in knowledge related to STD. both self-reported health status and knowledge of reproductive health are related to migrants’ educational attainment and length of stay in the urban destination. This study also finds ample evidence that female migrants’ access to urban health care is limited by a number of institutional barriers. (shrink)
ABSTRACTWe suggest that disability is metaphorically represented in people’s minds as heaviness. In three studies we demonstrate the existence of a mental association between physical weight (light...
The study suggests a model for understanding inter-group relations which has combined two psycho-social concepts: perceptions of collective narratives :26–38, 2002) and identity strategies . The model examined two minority groups of Israeli citizens: Palestinian Muslims and Christians, with a representative sample of 1,164 Muslims and 805 Christians, all Israeli citizens, aged 18–65. We used questionnaires which were developed and adapted for the unique population in this study. As expected, members of both groups mostly endorsed integration strategy. Stronger willingness for (...) competition and separation, as well as lower acceptance of the “other” collective narratives, were found among Christian participants compared to their Muslim counterparts. The expected pattern of inter-relations between the two psychosocial concepts was found: integration and assimilation strategies were related to higher rates of acceptance of the out-group collective narratives and to lower levels of legitimization of in-group collective narratives. In the same vein, the opposite pattern was found in the relations between strategies of competition and separation and the perceptions of collective narratives. The discussion focuses on the contribution of the theoretical model and the findings of our study to a better understanding of the complicated inter-group relations between Palestinian Muslims and Christians who are citizens of Israel. (shrink)
Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. This paper analyses responses to the (...) question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. (shrink)
This field study aims to explore the effect of the forced separation between Palestinians who are Israeli citizens and Palestinians living in the West Bank on their perceptions of collective narratives : 26–38, 2002) and their identity strategies. Two questionnaires, based on the theoretical categories and contents revealed in focus groups, were administered to wide ranging samples, comprised of 1,104 Palestinians who are Israeli citizens, and 948 Palestinians living in the West Bank, aged 18 and up. The results indicate differences (...) between the two Palestinian groups: Palestinians living in the West Bank significantly tended to endorse integration and blamed Israel for the separation, but also endorsed separation and social competition with the other Palestinian group, in comparison to the Palestinians living in Israel. The latter exhibited stronger tendencies to preserve their in-group collective narratives compared to the West Bank Palestinians. The older members of both groups perceived the intergroup relations in a more positive way. The results are mainly interpreted according to the social identity theory and the complex situation of living “on both sides of the fence”. (shrink)
ABSTRACTMoran and Bar-Anan. The effect of object-valence relations on automatic evaluation. Cognition and Emotion, 27, 743–752) demonstrated that evaluations on...
Las naciones y pueblos indígenas presentan preocupantes índices respecto a la salud, así como otras carencias como la pérdida de sus tierras, la alimentación, la educación y, en general, el ejercicio de sus derechos, consagrados por organizaciones internacionales como la ONU y la OMS-OPS. En Ecuador, de acuerdo con el orden jurídico constitucional, se han instrumentado políticas de salud que incluyen el lineamiento general de un enfoque intercultural de la atenciónprimaria que incorpora los saberes y prácticas ancestrales. Mediante una revisión (...) documental se examina la situación actual de la salud y la atención primaria entre las etnias indígenas del Ecuador. De este análisis se desprenden consideraciones para las políticas públicas de salud, la formación intercultural de los profesionales de los equipos de salud y, en especial, la articulación de las creencias, saberes y prácticas de la cultura de las etnias para la atención primaria de salud. Palabras Clave: Etnia, nacionalidad indígena, pueblo indígena, derecho a la salud, atención primaria. Referencias [1]Asamblea General de la Organización de las Naciones Unidas, «Resolución 48/134 de la Asamblea General de las Naciones Unidas sobre los Derechos de los pueblos y naciones indígenas,» de Asamblea General Resolución 48/134, New York, 2009. [2]Organización Panamericana de la Salud, «Derechos Humanos y Salud de los pueblos indígenas,» Organización Panamericana de la Salud, New York, 2008. [3]Alto Comisionado para los Derechos Humanos de la Organización de las Naciones Unidas, Declaración de las Naciones Unidas sobre los derechos de los pueblos indígenas. Manual para las instituciones nacionales de Derechos Humanos, Nueva York: Alto Comisionado de los Derechos Humanos de la Organización de las Naciones Unidas, 2013. [4]C. Torres Parodi y M. Bolis, «Evolución del concepto etnia/raza y su impacto en la formulación de políticas públicas para la equidad,» Revista Panamericana de Salud Pública, vol. 22, nº 3, pp. 405-414, 2007. [5]IIDH-OPS, «Salud indígena y derechos humanos,» OPS, Quito, 2006. [6]Organización Panamericana de la Salud, «Iniciativa de la Salud para los Pueblos Indígenas. Lineamientos estratégicos. Plan de acción 2003-2007,» Organización Mundial de la Salud, Quito, 2003. [7]Consejo Mundial de las Iglesias, «Segunda Asamblea Mundial de la Salud de los Pueblos,» Consejo Mundial de las Iglesias, Quito, 2005. [8]Grupo Internacional de Trabajo sobre asuntos indígenas, Instituto de Promoción de Estudios Sociales, Fundación Diversidad, «El Derecho a la Salud de los pueblos indígenas en aislamiento y en contacto inicial,» Grupo Internacional de Trabajo sobre Asuntos Indígenas, Quito, 2007. [9]Organización Panamericana de la Salud, «Salud de los pueblos indígenas de las Américas,» OPS, Quito, 1998. [10]Organización Inernacional del Trabajo, «Convenio número 169 de la OIT. sobre pueblos indígenas y tribales: hacia un futuro inclusivo, sostenible y justo.,» OIT, New York, 2019. [11]L. Almeida Vera, «Fundamentación del modelo de gestión intercultural ecuatoriana en la atención primaria desalud,» Medisam, vol. 8, nº 18, pp. 46-61, 2014. [12]Organización Internacional del Trabajo, «Implementación del Convenio núm 169 de la OIT sobre los pueblos indígenas y tribales: Hacia un futuro inclusivo, sostenible y justo,» OIT, New York, 2019. [13]C. Eysaguirre, Proceso de incorporación de la medicina tradicional, alternativa y complementaria en las prácticas oficiales de la salud. Tesis Magister Antropología, Lima: Universidad Nacional Mayor de San Marcos, 2016. [14]Organización de las Naciones Unidas para la Agricultura y la Alimentación, «Sobre la salud y la seguridad de los pueblos indígenas en riesgo debido al coronavirus,» FAO, New York, 2020. [15]Enlace Continental de Mujeres Indígenas de las Américas, Alianza de Mujeres Indígenas de Centroamérica y México, Red de Mujeres Indígenas Asiáticas, Organización de Mujeres Indígenas Africanas, «Llamado colectivo de las mujeres indógenas ante el COVID 19. Foro Internacional de Mujeres Indígenas,» ONU, New York, 2020. [16]Laboratorio de interculturalidad FLACSO Ecuador, Etnohistoria de los pueblos y nacionalidades originarias del Ecuador, Quito: FLACSO Ecuador, 2015. [17]UNICEF, Nacionalidades y pueblos indígenas. Políticas interculturales en Ecuador, Quito: UNICEF, 2009. [18]República del Ecuador, «Constitución de la República del Ecuador,» de 2008, Quito, 2008. [19]S. Ramírez Hita, «Políticas de salud basadas en el concepto de multiculturalidad: los centros de salud intercultural en el altiplano boliviano,» Avá Revista de Antropología, vol. 14, nº 2, pp. 1-28, 2009. [20]E. Arteaga, M. San Sebastián y A. Amores, «Construcción participativa de indicadores de la implementación del modelo de salud intercultural en el cantón Loreto, Ecuador,» Saúde em Debate, vol. 36, nº 94, pp. 402-413, 2012. [21]L. Véliz Rojas, A. Bianchetti Saavedra y M. Silva Fernández, «Competencias interculturales en la atención primaria de salud: un desafío para la educación superior frente a contextos de diversidad cultural,» Cuadernos de Saúde Pública, vol. 35, nº 1, pp. 62-71, 2019. [22]C. Walsh, Interculturalidad: Estado, sociedad: luchas decoloniales de nuestra época, Quito: Abya Yala UASB, 2015. [23]E. Ortiz Prado y G. Ceballos Serra, «Marco estratégico para la protección de los pueblos indígenas en aislamiento voluntario y contacto inicial. Consultoría sobre situación de salud de los pueblos indígenas en aislamiento y contacto inicial en el Ecuador,» Organización del Tratado de Cooperación Amazónica, Quito, 2014. [24]J. Betancurt, A. Green, J. Carrillo y Anane-Firempong, «Defining Cultural competence: a practical framework for adressing racial/ethnic disparities in health and health care,» Public Health, vol. 118, nº 2, pp. 293-302, 2016. [25]R. Ceballos, A. Amores y R. Rojas, Prestación de servicios de salud en zonas con pueblos indígenas, Quito: Programa Regional de Salud de los Pueblos Indígenas, 2009. [26]L. Pereira de Melo, «A contemporaneidade da teoría do cuidado cultural de Madeleine Leininger: una perspectiva geohistórica,» Ensaios e Ciencia: ciencias biológicas, agrarias e da Saúde, vol. 14, nº 2, pp. 21-32, 2010. [27]C. Rohrbach-Viadas, «Introducción a la teoría de los cuidados culturales enfermeros de la diversidad y la universalidad de Madeleine Leininger,» Revista Cultura del cuidado, vol. 2, nº 3, pp. 32-46, 1998. [28]O. Aguilar Guzmán, I. Carrasco González, M. García Piña, A. Saldívar y R. Ostiguín Meléndez, «Madeleine Leininger: análisis de sus fundamentos teóricos,» Revista de Enfermería Universitaria, vol. 4, nº 2, pp. 26-32, 2007. (shrink)
