Intra-consortium data sharing in multi-national, multi-institutional genomic studies: gaps and guidance

The HUGO Journal - Tập 3 - Trang 11-14 - 2009
Jerome Amir Singh1,2,3, Abdallah S. Daar4
1Centre for the AIDS Programme of Research in South Africa (CAPRISA), Nelson R Mandela School of Medicine, Durban, South Africa
2Howard College School of Law, University of KwaZulu-Natal, Durban, South Africa
3McLaughlin-Rotman Centre for Global Health, Dalla Lana School of Public Health, and Joint Center for Bioethics, University of Toronto, Toronto, Canada
4McLaughlin-Rotman Centre for Global Health, UHN and University of Toronto, Toronto, Canada

Tóm tắt

Growing investments in health research by governments and charitable organizations have fueled an increase in collaborative research projects between investigators from affluent and developing countries. Current international guidelines are silent on common intra-consortium data-sharing issues that arise in the context of such collaborations. A lack of guidance on intra-consortium data sharing threatens to undermine the success of crucial research ventures. In this work we outline some of the practical problems commonly faced by investigators working in multi-institutional, international genomic collaborations and offer recommendations on these issues. A data sharing policy should be prospectively negotiated and concluded between collaborators as early as possible. Sponsors of research, including those from developing countries, should issue detailed guidance on the above and related issues as doing so will facilitate research and catalyze scientific progress.

Tài liệu tham khảo

CHAVI: amended and restated research consortium agreement. Paragraph 8.1.4 Chokshi DA, Parker M, Kwiatkowski DP (2006) Data sharing and intellectual property in a genomic epidemiology network: policies for large-scale research collaboration. Bull World Health Organ 84:382–387 Hogue CJR (1991) Ethical issues in sharing epidemiological data. J Clin Epidemiol 44(Suppl 1):103S–107S