Data Access Policy
SciLifeLab National Sequencing Projects 2017
SciLifeLab National Sequencing Projects General Access Policy
SciLifeLab is committed to the principles of Open Science – Open Access to Literature, Research Tools and Data from publicly funded research. SciLifeLab works actively to ensure that the investments done in research infrastructure resources by society can achieve the highest possible impact. Therefore, researchers that receive grants from the SciLifeLab National Projects initiative to produce data should adhere to these principles when it comes to the data generated.
All national sequencing projects should:
- Formulate a Data Management Plan for the project (with the aid of SciLifeLab Data office).
- Assign a person responsible for the data generated.
- Deposit the raw or mapped sequence data in standard formats in a public international repository, or if no suitable repository is available, in a general-purpose repository that provides long-term storage and persistent identifiers for the data. At the latest, this should be done at time of publication of any scientific articles that are based on the data.
- Ensure that there is a mechanism to request access to the data. SciLifeLab Data Office can assist in setting up this mechanism.
- Acknowledge the support of the SciLifeLab National Sequencing Project grant and involved SciLifeLab platforms in article and data publications.
- Report back to SciLifeLab when data has been used in a publication and where the data has been deposited.
Policy for human genomic data – Swedish Genomes Program
The National Sequencing Projects initiative for human whole genome sequencing constitutes a considerable investment by SciLifeLab. It has the potential to produce research data of great importance for medical research also outside of the awarded projects. SciLifeLab must ensure that the data produced achieves the highest possible impact. It will be a prerequisite for funding that awarded projects will adhere to the general policy outlined above. Since the data generated is sensitive personal data, the following must also be addressed:
- A Data Access Agreement that defines under what terms and conditions data can be shared must be formulated. The SciLifeLab Data Office can aid in this when the funding has been awarded.
- Data must be shared based on the ethical considerations resulting from the consent agreements with the research participants.
- A Data Access Committee must be defined, that approves or denies access to the data is in accordance with the terms and conditions in the Data Access Agreement. Awarded projects will be supported in this by the SciLifeLab Data Office.
- Data must be deposited in a repository that has well defined process for requesting and granting access to the data in a secure manner according the Data Access Agreement.