TABLE 3—

Descriptive Summary of Studies Regarding US Lay Public Willingness to Participate in Genetic Research and Reasons for Declining Consent (n = 3)

Author Year	Purpose	Sample	Methods	Consent to Participation In Research	Less Likely to Consent	Reasons for Declinea
Audrain et al. 200226	Establish longitudinal cohort for study of genetic and other factors associated with teen smoking	Virginia (n = 2120) Parents of eligible teens Responders onlyb: White 64%, Asian 13%, Hispanic 12%, Black 7%, Other 4%, College grad 59%	1, 2, 4, 7, 8	54% of parents in total sample, 75% of parent responders (n = 1533), 99% of teens with parental consent (n = 1151)	Nonsmokers,c less education,c racial/ethnic minority,c Whites with less educationd	No interest 47%, confidentiality 16%, no time 10%, teen doesn’t smoke 10%, no benefit 5%
Bogner et al. 200418	Identify factors associated with willingness to participate in genotyping and DNA storage for mental health and aging research	Maryland (n = 3459) Current mental health research participants Primary care patients Aged ≥ 65 y Screened for eligibility onlyb: Black 30%, ≥ 80 y 33%	1, 2, 3, 4, 5	Genotyping: 9% of total sample, 88% of eligible responders (n = 342) Storage given genotyping: 7% of total sample, 68% of eligible responders (n = 342)	Genotyping and storage given genotyping: older age,c d Blackc d e	Genotyping: confidentiality 22%, no benefit 26%, don’t feel well 15%, not comfortable/fear 15%, don’t know 11%, Storage given genotyping: confidentiality 65%, concern over unknown 27%, don’t know 9%, no good reason for storage 7%
Royal et al. 200027	Establish longitudinal cohort for prostate cancer genetic research	Multistate (n = 8249 families) Black	1, 2, 4, 5, 6, 7, 8, 9, 10	0.5% of families in total sample, 1% of families expressing initial interest (n = 3400), 75% of interested and eligible families (n = 43 reflecting 25% attrition rate)	Less education (anecdotal observation)	Did not want family to know they had cancer, lack of trust of government, researchers, etc., fear of being used as guinea pigs, researchers do not give back to community, fear misuse of genetic information (charged higher insurance premiums), lack of immediate or direct benefit

Note. Table presents 3 of 14 total studies identified in literature search. Methods: 1 = nonrandom sampling; 2 = primary data collection; 3 = household specimen collection; 4 = actual request; 5 = health care setting/physician request; 6 = other in-person request; 7 = mailed request; 8 = telephone request/follow-up; 9 = Web site request; 10 = other mass media request.

^aProportions given when provided by study.

^bStatistically significant association found with willingness/consent in bivariate or stratified analysis (α = .05).

^cStatistically significant in multivariate regression analysis (α = .05)

^dLarger sample demographics not provided.

^eOther covariates used in multivariate regression analysis included measures of mental and physical health, and cognitive functioning.