Table 4.

Uncertainty themes and sub-themes discussed by PiGeOn interviewees over 12 months.

Themes and sub-themes	Baseline (T0)	3-month (T1)	12-month (T2)
Genome sequencing to reduce illness uncertainty
Etiology	X	X	X
Own illness risk	X	X	X
Disease trajectory uncertainty		X
Previous genetic testing		X	X
Illness uncertainty most salient	X	X	X
Continued uncertainty over bad news		X	X
Genome sequencing to reduce uncertainty about relatives' risk
Relatives illness risk	X	X	X
Children	X	X	X
Family planning	X	X
Family history of illness		X
Potential impact on relatives	X	X	X
Family communication	X	X	X
Family history influence on communication			X
Uncertainty generated by genome sequencing
No uncertainty	X	X	X
Practical—uncertain knowledge	X	X	X
Practical—uncertain of study processes		X	X
Practical—insurance/discrimination	X	X	X
Scientific—limitations of science	X	X	X
Scientific—result ambiguity	X	X
Scientific—likelihood of results			X
Personal—emotional reaction to results	X	X	X
Personal—life choices	X	X	X
Personal—ethical uncertainty		X
Decisional uncertainty (to have/not have; which results if any)	X	X	X
Uncertainty reduces/become episodic over time		X	X
Resilience and coping with uncertainty
Resilience	X	X	X
Mobilizing coping—information seeking	X	X	X
Mobilizing coping—lifestyle	X		X
Mobilizing coping—plan of action	X
Affect coping—seeking professional support	X		X
Affect coping—seeking informal support	X	X
Affect coping—positive attitude	X	X	X
Affect coping—trust in experts/research		X	X
Affect coping—reduce expectation			X
Affect coping—don't worry about things outside your control		X	X
Buffering coping—acceptance	X	X	X
Buffering coping—avoidance	X	X	X
Buffering coping—live in the now	X	X
Unhealthy behaviors	X
Worry/anxiety	X	X	X