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Title: | Ethical Data Release in Genome-Wide Association Studies in Developing Countries |
Authors: | Agbenyega, Edward Tsiri Parker, Michael Kwiatkowski, Dominic P. Bull, Susan J. Vries, Jantina de Doumbo, Ogobara K. |
Issue Date: | 24-Nov-2009 |
Publisher: | PLoS Medicine |
Citation: | PLoS Medicine, 2009 |
Abstract: | Developing countries carry a disproportionate
share of the global disease burden
[1]. One main obstacle to developing
better tools for disease prevention—such
as vaccines against malaria, tuberculosis,
and HIV—is our limited understanding of
the underlying mechanisms of disease and
protective immunity. Genome-wide association
(GWA) studies provide a powerful
way of getting at this problem by identifying
genetic variants determining resistance
or susceptibility to common diseases
[2–4]. GWA studies to date have mostly
focused on populations of rich countries,
and there is a case for greater scientific
investment in GWA studies relevant to the
needs of developing countries.
GWA studies in developing countries
raise a range of ethical issues. One aspect
is the need to protect the rights of the
individuals and communities who are the
subjects of the research, e.g., by developing
appropriate processes for valid consent
[5]. Another aspect is to ensure that
researchers and institutions in developing
countries, who generate samples and data
for GWA studies, are not put at a scientific
disadvantage when they participate in the
large collaborative networks that are
needed to undertake this type of research
[6]. We do not attempt to deal with here
the full spectrum of ethical issues raised by
GWA studies in developing countries, but
focus specifically on the problem of
releasing data to the broader scientific
community |
Description: | This article is published at PLoS Medicine, and also available at doi:10.1371/journal.pmed.1000143 |
URI: | doi:10.1371/journal.pmed.1000143 http://hdl.handle.net/123456789/15713 |
Appears in Collections: | College of Health Sciences
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