Ethical challenges in the release and publication of ethnicity-related research results. The case of the MalariaGEN Consortium. (360G-Wellcome-083326_Z_07_Z)

£90,487

A key ethical issue facing genomic epidemiology research is the collection and release of data on the ethnic background of research participants. Consideration of ethnicity is crucial to the interpretation of population genetic research, but current open access data release models in the field have been argued to pose ethical problems regarding the release of potentially sensitive ethnic information, and researchers are seeking alternative models for data release. However, there have been only limited attempts to increase understanding of the ethical issues related to the release of this information through empirical research. The proposed project will seek to fill this gap by examining and analysing stakeholder perspectives on the collection, release, publication and use of ethnic information in genomic epidemiology research, with the objective of developing guidelines for the ethical release of this data to the benefit of the scientific community. For the first time, this research will extend work on the use of ethnic information in genetics research to the African context. Empirical data will be collected in MalariaGEN research sites in Ghana, Kenya and The Gambia. In addition, interviews will be conducted with representatives of the three large funding bodies that currently finance genomic epidemiology research in developing countries.

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Grant Details

Amount Awarded 90487
Applicant Surname De Vries
Approval Committee Biomedical Ethics Funding Committee
Award Date 2007-06-07T00:00:00+00:00
Financial Year 2006/07
Grant Programme: Title PhD Studentship in H&SS
Internal ID 083326/Z/07/Z
Lead Applicant Dr Jantina De Vries
Partnership Value 90487
Planned Dates: End Date 2011-02-28T00:00:00+00:00
Planned Dates: Start Date 2007-10-01T00:00:00+00:00
Recipient Org: Country United Kingdom
Region South East
Sponsor(s) Prof Harold Jaffe