DataSHIELD: Resolving a Conflict in Contemporary Bioscience -- Performing a Pooled Analysis of Individual-Level Data Without Sharing the Data
Wallace, Susan E
Sheehan, Nuala A
Tobin, Martin D
Knoppers, Bartha M
Burton, Paul R
International journal of epidemiology 2010 Oct; 39(5): 1372-82
Contemporary bioscience sometimes demands vast sample sizes and there is often then no choice but to synthesize data across several studies and to undertake an appropriate pooled analysis. This same need is also faced in health-services and socio-economic research. When a pooled analysis is required, analytic efficiency and flexibility are often best served by combining the individual-level data from all sources and analysing them as a single large data set. But ethico-legal constraints, including the wording of consent forms and privacy legislation, often prohibit or discourage the sharing of individual-level data, particularly across national or other jurisdictional boundaries. This leads to a fundamental conflict in competing public goods: individual-level analysis is desirable from a scientific perspective, but is prevented by ethico-legal considerations that are entirely valid.
Showing items related by title, author, creator and subject.
Knoppers, Bartha Maria; Harris, Jennifer R; Burton, Paul R; Murtagh, Madeleine; Cox, David; Deschênes, Mylène; Fortier, Isabel; Hudson, Thomas J; Kaye, Jane; Lindpaintner, Klaus (2011-08)The rapid rise of international collaborative science has enabled access to genomic data. In this article, it is argued that to move beyond mapping genomic variation to understanding its role in complex disease aetiology ...