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| - Conditions for data access |
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| Conditions for access to data from the DNBC |
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Access to electronic data from interviews, data linkage and ad hoc analyses.
The Danish National Birth Cohort operates an open access policy. The DNBC Board will, however, give priority to projects already launched and agreements made.
The Board will not grant access to projects that may harm the DNBC’s reputation nor to projects whose purposes are incompatible with the overall aim of the project.
The DNBC management takes no responsibility for the scientific quality of projects in which they have no part.
Access to personalised data requires permission from the both the Danish Data Protection Agency as well as from the DNBC Board.
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Access to biological specimens
The access policy for biological specimens will be restrictive. The Scientific Ethical Committee, the Danish Data Protection Agency and the DNBC Board must sanction any access. The Steering Committee will ensure the following:
- a minimum only of biological material should be used
- data must be analyzed in certified laboratories
any remaining material should be restored to the biological bank
a considerable quantity of the biological material should still be available in the bank when the cohort children reach the age of 18.
biological specimens should be given solely to projects, which require blood samples or other information to be collected during pregnancy (gene-environment interaction).
a study design must be chosen which best utilizes the biological specimens.
the applicants should account for the feasibility of the analyses (requirements for transportation, fractioning and storage of the blood must be taken into account)
biological material may be used for purposes that do not comply with the NBC overall aim. Thus, biological material will not be given to commercial purpose projects, nor for use in analyses where results will not be published.
in cases of important terapeutical action only may biological material be handed over to individuals for diagnostic purposes
The DNBC Steering Committee may revise the present guidelines at any time.
Data from the Danish National Birth Cohort are public domain data with some restrictions. The members of the DNBC management hold user rights up to 2010 for specific projects. Furthermore the cohort is mainly financed by means of Danish national sources. It is therefore our hope that epidemiologists from outside the country who wish to use data from the DNB cohort will do so in collaboration with Danish scientists, preferably by carrying out the data analyses in Denmark.
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