Table 3. Results.

	Patient representative	Biobank administrator	Paediatrician	Paediatrician/researcher	Clinical geneticist	Physician, researcher, REC	Expert (legal/ethical)	Total, n=17
								Yes	No	Unknown
1. Informed consent
Explicit consent
Yes	2	2	2	1	3	1	2	13
No (opt-out)				2					2
Unknown				1	1					2
Broad research goals
Yes	1	2	2	3	4	1	2	15
No (disorder-specific)	1			1					2
Unknown										0
Specific age thresholds (years)
12–16		1	1			1		Total 12–16: 3
12–18	2	1	1	4	4		1	Total 12–18: 13
14/15							1	Total 14/15: 1
Ongoing obligation to inform
Yes	2	2	2	2	3	1	2	14
No				2	1				3
Unknown										0
Re-consent
Yes	1	1	1	1	3	1		8
No	1	1	1	3	1		2		9
Unknown										0
2. Individual research findings
Disclosure actionable findings
Yes	2	2	1	4	4	1	2	16
No									0
Unknown			1							1
Disclosure actionable findings with relevance to family
Yes	1	2	1	1	2		1	8
No									0
Unknown	1		1	3	2	1	1			9
Disclosure of late-onset findings
Yes	2							2
No		2	1	4	3	1	2		13
Unknown			1		1					2
Advise REC or colleague
Yes					1		1	2
No									0
Unknown	2	2	2	4	3	1	1			15
Parental right (not) to know
Yes								0
No	1	2		2	2	1	2		10
Unknown	1		2	2	2					7
Age threshold child's right (not) to know (years)
12			2	1	1			Total 12 years: 4
16/18	2	2		2	2	1	2	Total 16/18 years: 11
Unknown				1	1			Total unknown: 2