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

Abstract

Use 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 hypothetical 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 biobank specimens. NA and H women indicated that they were less likely than WNH women to agree to participate in a long-term biobank study. Given the importance of determining the genetic influence of health and disease, it is critical to attend to the questions and concerns of minority women regarding genetic studies.

Keywords: Biobank; Children; Genetic testing; Informed consent.

Fig. 1

Degree of willingness to participate by race and ethnicity (N = 37)