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Last updated: May 24, 2018

Participant recruitment and accessing samples

Key considerations:
  • Understanding if there is an obligation to disclose (return) results or not, is important for deciding on a model of consent and return of results.
  • Possible findings or results need to be understood by the researcher and their potential impact on the individual and family (physical and psychosocial) needs to be clearly explained and in terms the participants can understand.
  • Participants have a right to privacy and confidentiality and a study should have steps in place to protect the participants’ personal, clinical and genomic data.
  • Sample quality will have an impact on results.
  • Good data management from the outset will prevent complications with results and analysis.  

Before commencing a clinical genomics study, ethics approval as well as site specific (research governance) approval is required with a clear experimental design and data management plan. When a study generates information, which may affect the participants, their family or community, an ethically defensible plan (EDP) must be developed. An EDP is required to demonstrate that researchers have fully considered the implications of their study on the participants, and planned how they will interact with the participant.

To prevent issues with sequencing, analysis, returning results and publishing, good sample collection and data management practices are key. 

This section addresses: