www.bioshare.eu

D2K Members

Professor Paul Burton, Professor Madeleine Murtagh, Dr Joel Minion, Dr Olly Butters, Dr Becca Wilson   

Project 

Work Package 3: Epidemiology and biostatistics for harmonisation in biobanks

BioSHaRE is a consortium of European biobanks and researchers developing data harmonisation and standardisation tools and infrastructures to analyse pooled data from different cohort and biobank studies.  The pooling of data from multiple sites is required in order to obtain the very large sample sizes needed to investigate current questions in multifactorial diseases, notably on gene-environment interactions. D2K is piloting DataSHIELD with respect to the data analysis on the Healthy Obese Project within BioSHaRE.  

BioSHaRE Social Core Project

The aim of the BioSHaRE Social Core Project is to examine the social and epistemic implications of tools and methodologies for biobank standardisation and harmonisation and data sharing. The Social Core Project incorporates three major tasks:

• Integrated ethnographic studies of BioSHaRE, including the development of DataSHIELD, and standardization and harmonization
• Analytic review of recent social science literature and research on biobanking, data sharing and standardisation/harmonisation and
• Process evaluation of the tools develeoped under BioSHaRE

The work involves three integrated ethnographic studies of BioSHaRE, the development of DataSHIELD and Standardization and Harmonization, and an analytic review of recent literature and social science research on biobanks. The ethnographic studies combine participant observation, audio/video observation of BioSHaRE meetings and workshops, semi-structured interviews with individual BioSHaRE members and other relevant stakeholders and survey tools. The Social Core Project thereby brings a social science lens to questions of transdiciplinary working, translational bioscience and infrastructure science. The research investigates how scientific knowledge and practices ‘travel’ amongst the BioSHaRE-EU community, paying attention to sociologically interesting mechanisms, scientific languages and exchange zones that scientists create in order to communicate and exchange across borders and forms of expertise. It explores social and epistemic facilitators and barriers which enhance or hamper the communication and translation of knowledge and practices between scientists from different fields, with different ‘lab’ practices, methods and priorities, and from different countries.

Collaborations

Further information about the consortium is available at www.bioshare.eu

Key Papers

van Vliet-Ostaptchouk, J. V., Nuotio, M. L., Slagter, S. N., Doiron, D., Fischer, K., Foco, L., ... & Wolffenbuttel, B. H. (2014). The prevalence of metabolic syndrome and metabolically healthy obesity in Europe: a collaborative analysis of ten large cohort studies. BMC endocrine disorders, 14(1), 9.

Budin-Ljøsne, I., Burton, P., Isaeva, J., Gaye, A., Turner, A., Murtagh, M. J., Wallace, S., Ferritti, V. & Harris, J. R. (2014). DataSHIELD: An Ethically Robust Solution to Multiple-Site Individual-Level Data Analysis. Public Health Genomics , 18 (2)

Turner, A., Dallaire-Fortier, C., & Murtagh, M. J. (2013). Biobank Economics and the "Commercialization Problem". Spontaneous Generations, 7 (1), 69-80.

Demir, I. & Murtagh, M. J. (2013). Data sharing across biobanks: epistemic values, data mutability and data incommensurability.New Genetics and Society, 32 (4), 350-365.

Murtagh, M. et al., (2012). Securing the data economy: translating privacy and enacting security in the development of DataSHIELD". Public Health Genomics, 15 (5), 243-253.

Murtagh, M., Thorisson, G., Wallace, S., Kaye, J., Demir, I., Fortier, I., Harris, J., Cox, D., Deschênes, M. & Laflamme, P. (2012). Navigating the perfect [data] storm. Norsk Epidemiologi, 21 (2).

Murtagh, M.J., Demir, I., Harris, J.R. & Burton, P.R. (2011). Realizing the promise of population biobanks: a new model for translation. Human Genetics, 130 (3), 333-345.