Ethical, legal and societal issues

Noor understands that ethical, legal and societal issues (ELSI) have to be considered when working with human data in research. Therefore, Noor will learn about these aspects in parallel to the work carried out with synthetic data.

For Sam, ELSI might not be applicable at the moment if the work is done using synthetic data, but they might come back to this topic if they are creating a pipeline with the intention of feeding it with real data.

Sharing data is important for scientific advancement – but it is a challenge on many levels. Besides technical and health-related aspects, also ethical, legal and societal issues (ELSI) need to be considered to ensure a responsible data sharing flow, as well as fairness, equity and benefit sharing within transnational collaborations. Additionally, the institutional conditions and organisational challenges associated with data sharing are equally important.

ELSI addresses questions such as data sharing across continents, the legal basis of secondary processing of personal data, consent requirements and vulnerable groups or public, and stakeholders’ attitudes toward sharing genomic and health related data for research. Check this video for an overview of ELSI.

Additionally, data sharing should be FAIR – standing for Findable, Accessible, Interoperable, and Reusable. Move to the next section to learn more about the FAIR principles.