Table 2.

Frequencies and Examples of Children’s Questions and Concerns (N = 58 questions/concerns)

	N (%)	Example
Practical issues/procedures	26 (45%)	How many blood tubes do we get taken? (9 y.o. male) Are they going to do it now, are they going to do the testing now? (12 y.o. male)
Consent form/brochures	17 (29%)	Where do I sign? (15 y.o. male)
Risks/negative consequences	7 (12%)	There's nothing to worry about, right? They're not going to be like, horrible results, or anything. Like if it was some, like, life-threatening, I'd already have it, right? (16 y.o. female) You're gonna find something [referring to secondary findings] and I'm not going to be able to play soccer again (17 y.o. male) I don’t like getting my blood taken. (9 y.o. male)
Other	4 (7%)	Mother: So we’re pretty okay dealing with the level of uncertainty so far, so.” Provider: Okay. Proband: The carrier one, too? (17 y.o. female)
Genetics	1 (2%)	You say carrier, does that rule out homozygous recessive? (15 y.o. male)
Sample/design	1 (2%)	What are like the ages of people getting tested, like me? (17 y.o. female)
Benefits/positive consequences	1 (2%)	Am I able to say that I helped map the human genome by being, like, a participant in this? (15 y.o. male)
Medical/family history	1 (2%)	What’s dyslexic [referring to family member]? (16 y.o. female)
Research rights	1 (2%)	Do I have to do it [participate in the study]? (9 y.o. male)

Note: Values indicate number and percentage of questions/concerns from each category, out of 58 total questions/concerns