Ethical issues in human genomics research in developing countries

<p>Abstract</p> <p>Background</p> <p>Genome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.</p> <p>Discussion</p> <p>We explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.</p> <p>Summary</p> <p>Many ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects.</p

Pain assessment and management in patients undergoing endovascular procedures in the catheterization laboratory

OBJECTIVE To describe how pain is assessed (characteristic, location, and intensity) and managed in clinical practice in patients undergoing endovascular procedures in the catheterization laboratory setting. METHOD Cross-sectional study with retrospective data collection. RESULTS Overall, 345 patients were included; 116 (34%) experienced post-procedural pain; in 107 (92%), pain characteristics were not recorded; the location of pain was reported in 100% of patients, and its intensity in 111 (96%); management was largely pharmacologic; of the patients who received some type of management (n=71), 42 (59%) underwent reassessment of pain. CONCLUSION The location and intensity of pain are well reported in clinical practice. Pharmacologic pain management is still prevalent. Additional efforts are needed to ensure recording of the characteristics of pain and its reassessment after interventions.OBJETIVO Descrever como se dá na prática clínica a avaliação (característica, localização e intensidade) e o tratamento da dor em pacientes submetidos a procedimentos endovasculares em Laboratório de Hemodinâmica. MÉTODO Estudo transversal com coleta de dados retrospectiva. RESULTADOS Foram incluídos 345 pacientes; 116 (34%) apresentaram dor após o procedimento; em 107 (92%), as características da dor não foram registradas; a localização foi registrada em 100% dos pacientes, e a intensidade da dor em 111 (96%); o principal manejo foi o farmacológico; dos pacientes que receberam algum manejo (n=71), 42 (59%) tiveram sua dor reavaliada. CONCLUSÃO A localização e a intensidade da dor estão bem documentadas na prática clínica. O tratamento farmacológico foi prevalente. Mais esforços são necessários para que as características da dor sejam registradas, assim como sua reavaliação após intervenção.OBJETIVO Describir cómo se evalúa el dolor (características, localización e intensidad) y su manejo en la práctica clínica en pacientes sometidos a procedimientos endovasculares en el laboratorio de cateterización. MÉTODO Estudio transversal con recolección retrospectiva de datos. RESULTADOS En total, se incluyeron 345 pacientes; 116 (34%) experimentaron dolor post-procedimiento; en 107 (92%), no se registraron las características del dolor; la localización del dolor se informó en el 100% de los pacientes, y su intensidad en 111 (96%); el manejo fue en gran medida farmacológico; de los pacientes que recibieron algún tipo de tratamiento (n=71), 42 (59%) fueron sometidos a reevaluación del dolor. CONCLUSIÓN La ubicación y la intensidad del dolor se informan bien en la práctica clínica. El manejo farmacológico del dolor sigue siendo frecuente. Se necesitan esfuerzos adicionales para asegurar el registro de las características del dolor y su reevaluación después de las intervenciones