European Journal of Human Genetics - Abstract of article: Data sharing in large research consortia: experiences and recommendations from ENGAGE

European Journal of Human Genetics - Abstract of article: Data sharing in large research consortia: experiences and recommendations from ENGAGE

Article

European Journal of Human Genetics advance online publication 19 June 2013; doi: 10.1038/ejhg.2013.131

Data sharing in large research consortia: experiences and recommendations from ENGAGE
^EJHGOpen

Isabelle Budin-Ljøsne¹, Julia Isaeva¹, Bartha Maria Knoppers², Anne Marie Tassé², Huei-yi Shen³, Mark I McCarthy⁴, ENGAGE Consortium ³ and Jennifer R Harris¹

1. ¹Norwegian Institute of Public Health, Division of Epidemiology, Department of Genes and Environment, Oslo, Norway
2. ²Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada
3. ³Institute for Molecular Medicine Finland FIMM, University of Helsinki, University of Helsinki, Helsinki, Finland
4. ⁴Oxford Centre for Diabetes, Endocrinology and Metabolism, University of Oxford, Oxford, UK

Correspondence: I Budin-Ljøsne, Norwegian Institute of Public Health, Division of Epidemiology, Department of Genes and Environment, P.O Box 4404 Nydalen, Oslo NO-0403, Norway. Tel: +47 21 07 83 02; Fax: +47 21 07 82 52; E-mail: isabelle.budin.ljosne@fhi.no

Received 7 March 2013; Accepted 11 May 2013
Advance online publication 19 June 2013

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Abstract

Data sharing is essential for the conduct of cutting-edge research and is increasingly required by funders concerned with maximising the scientific yield from research data collections. International research consortia are encouraged to share data intra-consortia, inter-consortia and with the wider scientific community. Little is reported regarding the factors that hinder or facilitate data sharing in these different situations. This paper provides results from a survey conducted in the European Network for Genetic and Genomic Epidemiology (ENGAGE) that collected information from its participating institutions about their data-sharing experiences. The questionnaire queried about potential hurdles to data sharing, concerns about data sharing, lessons learned and recommendations for future collaborations. Overall, the survey results reveal that data sharing functioned well in ENGAGE and highlight areas that posed the most frequent hurdles for data sharing. Further challenges arise for international data sharing beyond the consortium. These challenges are described and steps to help address these are outlined.

Keywords:

biobanks; data sharing; consortia; genetic research