Ethical issues in human genomics research in developing countries

Abstract

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.

Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa

“…Genomics research involving African institutions tends to occur in the context of large-scale export of samples from the African continent to scientific institutions in more affluent parts of the world 8. Such research collaborations tend to have limited benefit for research participants, researchers and institutions in African countries.…”

Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience

“…[38] In genomics, these challenges are presented by the need to explain concepts such as 'genetics' , 'genomics' and 'data release' , and the reasons underlying the need to collect large quantities of samples and data from healthy populations for controls. [39] Aside from this, one of the peculiarities of genomic research is that the data produced have the potential to affect others, in the sense that such data can be informative about people other than the research participant. Even where personal identifiers are removed from genetic datasets, there may arguably be limited risk of participant identification.…”

“…The application of privacy to the individual, as opposed to a corporate norm, is the point of digression from Western thought in African communities. [38] According to de Vries et al, [39] data sharing and research in communities with a communal ethos present important ethical challenges that have been shown to differ from those with an individualistic Western ethos in significant ways.…”

Inclusion and Exclusion in Nutrigenetics Clinical Research: Ethical and Scientific Challenges

“…But it also raises important ethical issues. While many of the latter are common to any type of research in genetics (such as informed consent and privacy issues), others may arise specifically in nutrigenetics research [38] or with more acuteness in underserved countries or populations [64,65,66]. For instance, the evaluation of the impact of dietary programs, specific foodstuffs, or lack of given micronutrients on genome expression, stability, or integrity may be ‘stymied by the ethics of randomizing recipients’ [[67], p. 1139] to a control group consisting of individuals who, like many others in the same region or country, are lacking access to basic nutrition (see [67] for an example of such an issue in a non-genetic nutrition study).…”