Suchergebnisse

Background: Attitudes and understanding of clinical trial participants regarding biobanking are not fully understood. This study explored the baseline understanding of biobanking amongst clinical trial participants in Thailand, to determine factors and attitudes which may affect an individuals' decision to consent to involvement in biobanking studies.Methods: Using qualitative research methodology, clinical trial participants (n=24) who were already enrolled in clinical research studies at the Hospital for Tropical Diseases were given an information sheet explaining biobanking. An in-depth interview was then conducted along with a demographic questionnaire. The results were analyzed using NVIVO 10 software.Results: Fifty four percent felt they had a clearer understanding of biobanking after reading the brochure. All the respondents were willing to donate a blood sample to a biobank, and 22/24 wer–e positive towards the concept of biobanking, citing an altruistic desire to help future medical research efforts, potential benefits for their family and prospect of learning more about their own health from future studies such as genetic projects. There was an inverse relationship between the level of education / income of participants and their desire to receive direct financial compensation for donating a sample. Sixty two percent agreed that their sample could be stored and used indefinitely even after their death. Interviewees wishing to have clear structures of consent, protection of confidentiality of personal information, and fifty four percent wished to be contacted to specifically consent for future studies using their sample. They felt governance structures should involve researchers, a specific biobank committee and Government organizations. Whilst most responses were positive, including the potential for Thai samples to be used by researchers in other countries, the level of agreement was markedly lower if samples might be used by commercial companies such as pharmaceutical industry (73% neutral or disagreed).Conclusions: Most respondents have a clearer understanding and positive attitude towards the concept of biobanking. This study suggests that researchers should provide both written and oral information during enrollment for biobanking studies, giving time for participants to better understand the purpose of biobanking studies prior to signing a consent form. They have implications for the planning and establishment of biobanking facilities in Thailand.

National Malaria Control Programmes (NMCPs) currently make limited use of parasite genetic data. We have developed GenRe-Mekong, a platform for genetic surveillance of malaria in the Greater Mekong Subregion (GMS) that enables NMCPs to implement large-scale surveillance projects by integrating simple sample collection procedures in routine public health procedures. Samples from symptomatic patients are processed by SpotMalaria, a high-throughput system that produces a comprehensive set of genotypes comprising several drug resistance markers, species markers and a genomic barcode. GenRe-Mekong delivers Genetic Report Cards, a compendium of genotypes and phenotype predictions used to map prevalence of resistance to multiple drugs. GenRe-Mekong has worked with NMCPs and research projects in eight countries, processing 9623 samples from clinical cases. Monitoring resistance markers has been valuable for tracking the rapid spread of parasites resistant to the dihydroartemisinin-piperaquine combination therapy. In Vietnam and Laos, GenRe-Mekong data have provided novel knowledge about the spread of these resistant strains into previously unaffected provinces, informing decision-making by NMCPs. GenRe-Mekong provides detailed knowledge about drug resistance at a local level, and facilitates data sharing at a regional level, enabling cross-border resistance monitoring and providing the public health community with valuable insights. The project provides a rich open data resource to benefit the entire malaria community. The GenRe-Mekong project is funded by the Bill and Melinda Gates Foundation (OPP11188166, OPP1204268). Genotyping and sequencing were funded by the Wellcome Trust (098051, 206194, 203141, 090770, 204911, 106698/B/14/Z) and Medical Research Council (G0600718). A proportion of samples were collected with the support of the UK Department for International Development (201900, M006212), and Intramural Research Program of the National Institute of Allergy and Infectious Diseases.