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Last updated: Apr 09, 2018

Data storage beyond the study

Data storage beyond the study must be considered as part of the ethically defensible plan (EDP), including submitting to public repositories and publications.

Ongoing storage after clinical genomics research studies can be costly, particularly due to the size of the raw and aligned data files. Secure access to sensitive participant data – whether it’s re-identifiable or non-identifiable – during and beyond the study should also be considered when developing the EDP.

For more information see - Making yourself data capable and Ethical considerations for clinical genomics research - ethical defensible plan (EDP)

Have you thought about?

  • How secure is your storage and who has access to the data?
  • What form or formats will you store the data beyond the study?
  • What are your organisation’s requirements and how will you comply with existing local, state and federal guidelines and existing agreements with data repositories?