Table 3.

Demographics of participants and research professionals participating in focus groups.

	N	Gender	Mean age in years (range)	Ethnicity	Race	Language	Education	Employment status
Total of research participants	85	38 males	50	79 not Hispanic/Latino	49 White	92% English	13% high school or less	35% full time
		46 females	(19–86)	6 not reported	24 Black/African‐American	8% not reported	28% some college	19% part time
		1 not reported			2 Asian		31% graduated 4 year college	23% not in labor
Affected/intervention (AI)	27				2 American Indian/Alaska native		26% graduate school	Force
Affected/natural history (AN)	28				8 not reported		2% not reported	9% unemployed
Normal volunteers (NV)	30							2% seasonal
								11% not reported
Total of professionals	29	7 males	50	28 not reported	28 White	100% English	7% graduated 2 year college
		22 females	(31–76)	Hispanic/Latino	1 Asian		10% graduated 4 year college
Investigators	7			1 not reported			38% some graduate
Coordinators	11						Education
Ethicists	11						17% PhD
							21% MD
							3% MD/PhD
							3% not reported