Willingness of women to participate in obstetrical and pediatric research involving biobanks

AbstractUse of biobanks for future genetic/genomic testing has increased. Biospecimens are increasingly being collected from infants/children; however, little is known about attitudes towards collection of biospecimens from postpartum women and their child. Using a hypothetical consent, this study investigated willingness to participate and attitudes, beliefs, and concerns related to consent materials requesting the biobanking genetic samples. A cross-sectional mixed methods design included women who reviewed a hypothetical consent related to biobanking genetic samples. Women were asked about their willingness to participate, followed by a focus group about biobanks and genetic/genomic testing. Post-focus group questionnaires assessed willingness to participate, the influence of study characteristics, and attitudes about genetic testing. Women (N = 37) were 29.0± 7.3 years of age (range 19–44); 51% had children and 28% were currently pregnant. A total of 46% were Hispanic (H), 38% were White non-Hispanic (WNH), and 16% were Native American (NA). Seventy-six percent (28/37) initially indicated that they would participate in the hypo thetical study. Race and ethnicity impacted whether women would participate. Fewer NA women indicated that they would participate compared with H women and with WNH women (p <  0.02). Age, pregnancy status, having children, education level, insurance status, and income had no impact on participation decision and willingness to bioban...
Source: Journal of Community Genetics - Category: Genetics & Stem Cells Source Type: research