Publishing and Sharing Sensitive Data
Some data are born sensitive, some achieve sensitivity, and some have sensitivity thrust upon them!
The Australian National Data Service (ANDS) has just released a Guide to Publishing and Sharing Sensitive Data which includes a decision tree to help researchers decide whether they can publish such data. The guide is drawing the best practice for publication and sharing of sensitive research data in the Australian context. It provides genuine, step-by-step advice about what you need to know and do before publishing and sharing your sensitive data, including confidentialising your human and sensitive data, how to legally do that, what to include in a consent form requesting data publication and sharing etc. By following this Guide, and the steps within, you will be able to make clear, lawful, and ethical decisions about sharing your data safely. In most cases it can be done!
By definition sensitive data are ‘data that can be used to identify an individual, species, object, process, or location that introduces a risk of discrimination, harm, or unwanted attention’. For example, sensitive human data most commonly refers to sensitive personal information. That is when the information shared can be used to identify a person or group of people. Personal information can thus be thought of as one type of sensitive data. In most cases, personal information is sensitive when it directly identifies a person (e.g., name, date of birth, address) This kind of data has often been excluded from discussions about data publication and sharing. It was considered that sharing sensitive data safely is too hard or not ethical. However, the greater understanding and the ability to confidentalise data has changed this assumption.
By definition sensitive data are ‘data that can be used to identify an individual, species, object, process, or location that introduces a risk of discrimination, harm, or unwanted attention
In most cases, confidentialised sensitive data is published with limited access, implicating that a description (i.e., ‘metadata’) is published in a data repository and its discoverability is not restricted. However, anyone who wants to gain access to this data should meet certain conditions.
The benefits of sharing data go much further than just meeting publisher or possible funder requirements. The advantages to the research community and institutions are more than obvious. If data or data description of a dataset are published, they can be discovered by those in need, and thus be cited in favour of the original collector or owner. When you choose to share your data with others for reuse, the chances for new collaborations and publications are boosted. Last, but not least, storing your data in a public repository gives you the security that your data will remain accessible for further research and that you will be a recognised contributor the to research knowledgebase.
Read the full report from ANDS: Guide to Publishing and Sharing Sensitive Data