Resource centre ethics team

 

The ethics team provides support for MalariaGEN investigators  responding to ethical issues, assists in developing MalariaGEN policy on issues of ethics and ownership, and conducts research into the ethical and social implications of the new science of genomic epidemiology.

 

People

• Susan Bull
• Jantina de Vries
• Michael Parker

About the team

The ethics team is part of the MalariaGEN resource centre.  The team is jointly based at the Wellcome Trust Centre for Human Genetics, and at the Ethox Centre within the Department of Public Health at Oxford University.

The ethics team assists the Consortium to identify, analyse and appropriately respond to the ethical issues that arise before, during and after sample collection for the consortium, and to share good practice both across the consortium and with the wider research community.

Some ethical issues can be resolved on a case by case basis with support from the ethics team, for example ethical review of Consortial Projects and developing templates and guidelines for consent processes.  As the Consortial Projects develop, there are ethical issues relating to data release and acceptable uses of MalariaGEN data by external researchers.

In other areas the team has led the development of network policies to address specific issues. Where necessary, team members conduct novel empirical research to inform the development of appropriate responses to ethical issues arising during MalariaGEN research.

Annual MalariaGEN network meetings and local training workshops have provided opportunities to review ethical issues encountered by MalariaGEN investigators, and to provide training both in research ethics, and specific issues raised by MalariaGEN studies. To date regional and local workshops have been held with MalariaGEN partners in Ghana, Mali, Thailand, Vietnam and Kenya.

In some cases, it has become clear that addressing an ethical issue or potential roadblock will require a more sustained intervention. One example is need for development of materials and methods for the training of research ethics committee members about the ethical dimensions of genomic research in developing countries. A recent successful application to the Wellcome Trust has provided resources to develop such training courses and materials. In addition funding for PhD studentships has been secured, which will build capacity in addressing ethical issues in international collaborative genomic health studies.