We collected the main data set of the study through
semi-structured interviews with 48 participants. The
interview questions encourage participants to talk about
issues they feel are critical to genetic information
management and KM. We used convenience sampling,
snowballing, and theoretical sampling to identify
participants that represent key stakeholder groups of the
clinical genetic services in New Zealand. Their roles
include those of patients and family members . healthcare providers , genetic counselling
professionals , genetic testing laboratory scientists
, governance health IT professionals
researchers directors of health institutions providing
genetic services and clinical advisors at indirect
health services such as health insurance providers .
Some participants have more than one role in the system,
for instance as both clinician and director.