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Last updated: May 15, 2018

Planning for participant interactions

The nature of genomic data requires that several specific ethical considerations be kept in mind when undertaking genomic research. Consent and processes for interacting with participants need to be at the forefront of research planning and be outlined in an ethically defensible plan (EDP).

An EDP should consider the participants’ needs and rights, and be capable of being implemented practically, taking the study’s context into account. The EDP may outline mechanisms and processes for interacting with participants at all stages of the study, including after it has been concluded.

Depending on the study, researcher may need to interact with the participants or their data at different stages (Figure 1).

Participant interactions


Figure 1:  Stages when a clinical genomics research study may interact with participants, their samples or data.

Have you thought about? 

  • Is this a low risk study with few implications for relatives or does it have a wide potential impact?


Other sections that address situations when a researcher may interact with the participants or their data include: