MalariaGEN

Malaria is one of humankind’s most persistent and deadly foes, causing debilitating illness in approximately half a billion people each year. The greatest burden of the disease falls on African children – over a million die each year of malaria. Successful vaccine development relies on a greater understanding of the genetic and immunological responses that determine the severity of an individual patient’s malaria, and ultimately whether they live or die. The mapping of the entire human genome and recent advances in molecular technologies now mean that it is possible for scientists to look at genetic information from entire populations. This information can be used to identify critical mechanisms of protective immunity against malaria that will help explain why some children survive malaria, others die of the disease, and some are infected but do not become ill.

An exciting new initiative, the Malaria Genomic Epidemiology Network, MalariaGEN, which is based at the Kwiatkowski laboratory in Oxford University, draws on the expertise of scientists from more than 20 countries and aims to integrate the latest genomic and epidemiological knowledge and technology in the attempt to better understand childhood malaria.

The cutting edge and rapidly evolving field of genomic epidemiology, particularly when carried out collaboratively between developing and developed countries, raises new and important ethical and social issues. These include: the development of appropriate processes of obtaining consent (in a variety of different countries and locations within countries) and, addressing questions of benefit-sharing and ownership in international collaborative research. The MalariaGEN Grand Challenges Programme will involve approximately 18 sub-grants to partner institutions in malaria endemic countries, each of which will be contributing to and benefiting from, a new standardised resource. It is a unique venture requiring the development of best ethical practices that can be developed in situ as part of an world-leading project.

The ethics support and research within MalariaGEN will be led by the Ethox Centre in collaboration with the MalariaGEN coordinating centre and the project partners. The ethical activities within MalariaGEN include:

• Providing ethics support to the sites and carrying out research on the development of models of community consultation.
• Providing ethics support to the co-ordinating centre and the sites, and carrying out research on the ethical and social implications of the publication of data and open access (Jantina de Vries).
• Organising an annual MalariaGEN ethics network workshop/conference to identify ethical and social issues in practice and to provide ethics training
• The establishment of and support for an Expert Advisory Group of Ethics and Ownership to support and advise the MalariaGEN partners
• Carrying out empirical ethics research into the ethical and social dimensions of global genomic research on malaria 

Empirical ethics research programme

Three ethics research projects are currently being carried out by the Ethox Centre within the MalariaGEN consortium:

• Ethical challenges in the release and publication of ethnicity-related research results (see specific project page for more information)
• Consent in global genomic research in malaria (see specific project page for more information)
• The roles of ethics in effective global genomics research networks (see specific project page for more information)