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Population Research

Consent for Genetic Research in a General Population: The NHANES Experience
Geraldine M. McQuillan, PhD1; Kathryn S. Porter, MD, MS1; Maria Agelli, MD, MS2; Raynard Kington, MD, PhD3

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Tables
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TABLE 1: Overall interview response rates for NHANES 1999–2000 participants aged 20 or more years by demographic categories

Demographic characteric
1999
2000
No. eligible
No. interviewed
% (95% CI)a
No. eligible
No. interviewed
% (95% CI)a
Total
2721
1947
71.6 (69.9–73.3)
3680
2933
79.7 (78.3–81.0)
Race/ethnicityb
Non-Hispanic white
1330
882
66.3 (63.8–68.9)
1696
1330
77.3 (74.4–80.2)
Non-Hispanic black
427
306
71.7 (67.4–75.9)
811
627
77.3 (74.4–80.2)
Mexican American
790
630
79.8 (76.9–82.6)
758
658
86.8 (84.4–89.2)
Other
174
129
74.1 (67.6–80.6)
415
318
76.6 (72.6–80.7)
Gender
Male
1302
920
70.7 (68.2–73.1)
1721
1349
78.4 (76.4–80.3)
Female
1419
1027
72.4 (70.1–74.7)
1959
1584
80.9 (79.1–82.6)
Age
20-29
468
361
77.1 (73.3–80.9)
585
510
87.2 (84.5–89.9)
30-39
497
345
69.4 (65.4–73.5)
577
479
83.0 (80.0–86.1)
40-49
425
310
72.9 (68.7–77.2)
571
455
79.7 (76.4–83.0)
50-59
308
223
72.4 (67.4–77.4)
487
363
74.5 (70.7–78.4)
60+
1023
708
69.2 (66.4–72.0)
1460
1126
77.1 (75.0–79.3)

a 95% confidence interval.
b Race/ethnicity is based on the screener collected for sampling purposes and therefore differs slightly from categories in Table 2 (see description in “Methods”
section).

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TABLE 2: Consent to genetic research for NHANES 1999–2000 interviewed participants aged 20 or more years by demographic categories

Demographic characteric
1999
2000
No. interviewed
No. consented
% (95% CI)a
No. interviewed
No. consented
% (95% CI)a
Total
1947
1635
84.0 (82.4–85.6)
2933
2501
85.3 (84.0–86.6)
Race/ethnicityb
Non-Hispanic white
895
766
85.6 (83.3–87.9)
1338
1179
88.1 (86.4–89.9)
Non-Hispanic black
302
221
73.2 (68.2–78.3)
621
505
81.3 (78.3–84.4)
Mexican American
625
538
86.1 (83.4–88.8)
658
548
83.3 (80.4–86.1)
Other
125
110
88.0 (82.3–93.7)
316
269
85.1 (81.2–89.1)
Gender
Male
920
791
86.0 (61.5–66.8)
1349
1177
87.3 (85.5–89.0)
Female
1027
844
82.2 (79.8–84.5)
1584
1324
83.6 (81.8–85.4)
Age
20-29
361
299
82.8 (78.9–86.7)
510
436
85.5 (82.4–88.6)
30-39
345
286
82.9 (78.9–86.9)
479
422
88.1 (85.2–91.0)
40-49
310
264
85.2 (81.2–89.1)
455
400
87.9 (84.9–90.9)
50-59
223
194
87.0 (82.6–91.4)
363
314
86.5 (83.0–90.0)
60+
708
592
83.6 (80.9–86.3)
1126
929
82.5 (80.3–84.7)
Years of education c  
Less than HS
736 611 83.0 (80.0–85.7) 1159 985 85.0 (82.9–87.0)
HS diploma
375 307 81.9 (78.0–85.8) 722 632 87.5 (85.1–90.0)
Some college
826 707 85.6 (83.2–87.9) 1037 881 85.0 (82.8–87.1)
Language of interview d  
English
1706 1440 84.4 (82.7–86.1) 2464 2098 85.2 (83.7–86.6)
Spanish
236 191 80.9 (75.2–85.7) 449 387 86.2 (83.0–89.4)
Poverty index e  
<1
272 226 83.1 (78.6–87.5) 587 509 86.7 (84.0–89.5)
≥1
1221 1066 87.3 (85.4–89.2) 1832 1629 88.9 (87.5–90.4)

a 95% confidence interval.
b Confirmed race/ethnicity based on race/ethnicity questions obtained in the household interview from the participant.
c 10 individuals with missing education in 1999, 15 in 2000. HS, high school.
d 5 interviews in other language in 1999, 20 in 2000.
e Individuals with missing poverty index had lower response rates for genetic consent (1999 n = 454, 75.6%; 2000 n = 514, 70.6%).

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TABLE 3: Relative odds for lack of consent to genetic research from logistic regression in adult participants aged 20 years and older, NHANES 1999 and 2000

Demographic characteristic
Odds ratio (95% CI)a
1999
2000
Race/ethnicityb
2.3 (1.5–3.5)
1.9 (1.4–2.6)
Non-Hispanic black
0.7 (0.4–1.1)
1.5 (1.1–2.2)
Non-Hispanic white
Reference group
Reference group
Sex
Female
1.4 (1.0–1.9)
1.3 (1.0–1.7)
Male
Reference group
Reference group
Age
20-29
1.0 (0.6–1.6)
0.8 (0.6–1.2)
30-39
0.8 (0.5–1.3)
0.7 (0.4–1.0)
40-49
0.9 (0.6–1.4)
0.6 (0.4–1.0)
50-59
0.7 (0.4–1.3)
0.7 (0.5–1.1)
60+
Reference group
Reference group
Years of education
Some high school
1.3 (0.8–2.0)
0.7 (0.5–1.0)
High school graduate
1.3 (0.9–2.0)
0.7 (0.5–0.9)
Some college
Reference group
Reference group
Poverty index
<1
1.3 (0.8–1.9)
1.3 (1.0–1.8)
≥1
Reference group
Reference group

a 95% confidence interval.
b Confirmed race/ethnicity based on race/ethnicity questions obtained in the
household interview from the participant.

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Page last reviewed: June 8, 2007 (archived document)
Page last updated: November 2, 2007
Content Source: National Office of Public Health Genomics