University of Khartoum

Ethical Issues in Human Genomics Research in Developing Countries

Ethical Issues in Human Genomics Research in Developing Countries

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dc.contributor.author Ibrahim, Muntaser E.
dc.contributor.author Parker, Michael
dc.contributor.author Jane Bull, Susan
dc.contributor.editor en_US
dc.contributor.other Molecular Biology en_US
dc.date 2011-03
dc.date.accessioned 2015-11-15T07:36:05Z
dc.date.available 2015-11-15T07:36:05Z
dc.date.issued 2015-11-15
dc.date.submitted 2015
dc.identifier.uri http://khartoumspace.uofk.edu/123456789/17075
dc.description.abstract Background: 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. Discussion: 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. Summary: 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. en_US
dc.language.iso en en_US
dc.publisher UOFK en_US
dc.subject Ethical Issues en_US
dc.subject Human Genomics Research en_US
dc.subject Developing Countries en_US
dc.title Ethical Issues in Human Genomics Research in Developing Countries en_US
dc.type Publication en_US
dc.Faculty Endemic Diseases en_US

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