Video: What are the ethical guidelines to sharing/uploading full data sets in an open repository?

Open data repositories are platforms where researchers can share and download original research datasets. 

Sharing data in an open repository increases a study’s transparency, allowing other researchers to validate and reproduce the findings. As a result, open access to datasets promotes scientific discovery, transparency, and the impact of a particular study. 

Open data repositories have grown in importance, and some prestigious scientific journals now make data sharing an important prerequisite for manuscript acceptance. However, before uploading or sharing your dataset, you should consider some ethical aspects. 

When sharing human data, it is critical to ensure that they have been anonymized. Names, initials, addresses, specific dates (birth dates, death dates, examination dates), and contact information should never be shared. 

Another critical aspect is that the study participants should provide consent to make the data publicly available. Authors should also ensure that the project received ethical review approval and that the data were collected in accordance with the guidelines for studies involving human subjects. Further, certain data cannot be shared owing to participant privacy violations, national security concerns, or patent restrictions. 

When a dataset is published, repositories assign it an identifier, such as a digital object identifier (DOI) or an accession number. 

Further, it is critical to ensure that the data are of the highest quality and are documented appropriately. A detailed documentation describing the dataset, including its sources, collection and processing methods, limitations, and potential biases, is essential. Some journals recommend that the data should be shared in accordance with the FAIR principles (Findable, Accessible, Interoperable, Reusable). 

In case of any concerns, the authors should consult their ethics review committee before submitting the data to ensure that the data are shared correctly and in accordance with ethical standards. 

Further reading: 

• https://jamanetwork.com/journals/jama/fullarticle/2799369 Data Sharing and the Growth of Medical Knowledge 
• https://www.nature.com/articles/s41597-021-00981-0 Data sharing practices and data availability upon request differ across scientific disciplines