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When the DNBC started there was a growing body of evidence coming mainly from the UK, the Nordic countries and the US indicating that early exposure may have long lasting health consequences. The Nordic countries had the advantage that inexpensive long term follow-up is possible due to our personal ID numbers and a long history of a large variety of registers related to health, social conditions, occupational history and family conditions. Most of the health registers are outcome registers and lack data on putative causes for disease. These putative causes (exposures) can be collected by asking, measuring and by analyzing biological samples reflecting internal exposures or genetic/epigenetic markers. A cohort study needs personal and sensitive data. At the same time the valuable data collected has to be as accessible as possible to make sure data is available and used for the public good. Not in order to promote individual epidemiologists, but to help preventing disease and promote help. This point of view requires a fundamental philosophy of open access to data given ethical conditions and principles of data protection are not to be violated. A cohort data collection has to be an open data source and collection of data for private research use only should not be encouraged. In the DNBC only data dedicated to the principle of open access was and is accepted. From the start all data collected within the framework of the DNBC belonged to no one in particular. A Steering Committee to secure this principle was therefore established. Open access to data is controversial. It is a way to obtain important information at a rapid speed, but it may also be a threat to privacy and researchers thirst for “ownership” and competitive advantages. Open access to data is also one of the most important quality assurance mechanisms we have and we invite and encourage people to check our and others' results. In research we are interested in general laws of nature, not in private matters and competitive advantages, making it possible to combine care for privacy with productive science. Data should be stored in a central place without personal identifiers such as name, CPR-numbers, etc. These identifiers are needed to link and clean data, but not when doing research. Access to individual data for linking purposes should therefore only be given to a limited set of data managers, who have signed a document stating they follow all principles laid down by the national Data authority and Good Epidemiologic Practice. We have no known examples of researchers in Denmark having misused personal data, and it is important we maintain this track record. Unless we are constantly alert, privacy will be violated sooner or later and such a violation may have serious consequences for most of us, especially for those running large scale cohorts.

Better health for mother and child – The Danish National Birth Cohort (DNBC), its structure, history and aims