BackgroundGenome-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.DiscussionWe 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.SummaryMany 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. (shrink)

Public discourse on race-specific medicine typically erects a wall between the scientific use of race as a biological category and the ideological battle over race as a social identity. Scientists often address the potential for these therapeutics to reinforce a damaging understanding of “race” with precautions for using them rather than questioning their very development. For example, Esteban Gonzalez Burchard, an associate professor of medicine and biopharmaceutical sciences at the University of California, San Francisco, states, “We do see racial differences (...) between populations and shouldn’t just close our eyes. Unfortunately, race is a politically charged topic, and there will be evildoers. But the fear should not outweigh the benefit of looking.” Although it is recognized that ideology influences thesocialmeaning of race, it is usually assumed that there is a separate, prior scientific understanding of race that is not contaminated by politics. (shrink)

Race is not a scientific category, but African Americans have increased prevalence and severity of heart failure. The African American Heart Failure trial showed the benefit of a combination of isosorbide dinitrate and hydralazine . Future research may unmask the reason for cardiovascular differences in therapy.

Background: The use of race as a category in medical research is the focus of an intense debate, complicated by the inconsistency of presumed independent variables, race and ethnicity, on which analysis depends. Interpretation is made difficult by inconsistent methods for determining the race or ethnicity of a participant. The failure to specify how race or ethnicity was determined is common in the published literature.Hypothesis: Criteria by which they assign a research participant to racial or ethnic categories are not reported (...) by published articles.Methods: Methods were reviewed for assigning race and ethnicity of research participants in 268 published reports reporting associations among race , health outcome and genotype.Results: Of the 268 published reports reviewed, it was found that 192 did not explain their methods for assigning race or ethnicity as an independent variable. This was despite the fact that 180 of those reports reached conclusions about associations among genetics, health outcome and race or ethnicity.Conclusions: More attention needs to be given to the definition of race and ethnicity in genetic studies, especially in those diseases where health disparities are known to exist. (shrink)