Rapid Ethical Appraisal: A tool to design a contextualized consent process for a genetic study of podoconiosis in Ethiopia [version 1; referees: awaiting peer review]
نویسندگان
چکیده
Obtaining genuine informed consent from research participants in Background: developing countries can be difficult, partly due to poor knowledge about research process and research ethics. The situation is complicated when conducting genomic research on a disease considered familial and a reason for stigmatisation. We used a Rapid Ethical Appraisal tool to assess local factors that were Methods: barriers to getting genuine informed consent prior to conducting a genetic study of podoconiosis (non-filarial elephantiasis) in two Zones of Ethiopia. The tool included in-depth interviews and focus group discussions with patients, healthy community members, field workers, researchers/Institutional Review Board (IRB) members, elders, religious leaders, and podoconiosis administrators who work closely with
منابع مشابه
Rapid Ethical Appraisal: A tool to design a contextualized
Obtaining genuine informed consent from research participants Background: in developing countries can be difficult, partly due to poor knowledge about research process and research ethics. The situation is complicated when conducting genomic research on a disease considered familial and a reason for stigmatisation. We used a Rapid Ethical Appraisal tool to assess local factors that Methods: wer...
متن کاملRapid Ethical Appraisal: A tool to design a contextualized
Obtaining genuine informed consent from research participants Background: in developing countries can be difficult, partly due to poor knowledge about research process and research ethics. The situation is complicated when conducting genomic research on a disease considered familial and a reason for stigmatisation. We used a Rapid Ethical Appraisal tool to assess local factors that Methods: wer...
متن کاملRapid Ethical Appraisal: A tool to design a contextualized
Obtaining genuine informed consent from research participants Background: in developing countries can be difficult, partly due to poor knowledge about research process and research ethics. The situation is complicated when conducting genomic research on a disease considered familial and a reason for stigmatisation. We used a Rapid Ethical Appraisal tool to assess local factors that Methods: wer...
متن کاملImpact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study
BACKGROUND The consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Et...
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BACKGROUND Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining...
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