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.

A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States

“…In an effort to protect the identity of study participants, many studies provided limited demographic information (eg, gender, age, education, income), and the majority did not disclose the names of specific tribes involved in the studies. For the 19 studies that reported on gender, 15 featured a majority of female participants, 10 , 19–24 , 28–32 , 34 , 35 , 37 2 were nearly equally distributed with a slight prevalence toward females (16 females, 15 males; 29 females, 24 males), 18 , 25 and 1 was near-equal with a slight preference toward males (exact numbers not reported). 16 The vast majority of studies did not distinguish between sex and gender identity.…”

“…One study offered a category for Two-Spirit/LGBTQ participants. 19 Education was reported for 11 studies 19–22 , 26 , 29 , 31 , 32 , 35 , 37 , 38 and socioeconomic status was reported for 4 studies. 21 , 29 , 35 , 38 Five studies were conducted exclusively in urban settings, 16 , 20 , 28 , 33 , 37 3 were conducted exclusively in rural settings, 25 , 31 , 38 and 9 were conducted in a combination of urban and rural settings.…”

“… 19 Education was reported for 11 studies 19–22 , 26 , 29 , 31 , 32 , 35 , 37 , 38 and socioeconomic status was reported for 4 studies. 21 , 29 , 35 , 38 Five studies were conducted exclusively in urban settings, 16 , 20 , 28 , 33 , 37 3 were conducted exclusively in rural settings, 25 , 31 , 38 and 9 were conducted in a combination of urban and rural settings. 18 , 21–24 , 26 , 27 , 29 , 30 Three studies did not specify whether the setting was rural or urban, 19 , 32 , 35 and 1 study did not disclose any information about setting.…”

“…24 Similarly, a study of AN participants’ perceptions of biobanking research found that the vast majority of participants weighed the risks and benefits of biobanking research based on the extent to which participation could benefit future generations, 26 and AI participants in a mixed-methods focus group and survey study rated the potential to help children as the most positive factor of biobanking research. 35 …”

“…Three studies focused on consent in health research in general 18 , 24 , 30 and 10 studies discussed consent in the context of research involving biological specimens. 16 , 21 , 25 , 26 , 28 , 29 , 32 , 33 , 35 , 37 …”