Factors influencing biospecimen collection in decentralized pregnancy and birth cohorts: A qualitative study

Although decentralized research is being used more frequently, few data are available regarding barriers for potential subjects related to engaging in decentralized research with remote biospecimen collection, especially within pregnancy and birth cohorts that include individuals of diverse racial and ethnic backgrounds.

Focus groups and individual interviews with pregnant and postpartum women were conducted in English and Spanish. Thematic analysis was used to identify motivators and barriers to participation in decentralized research involving biospecimens.

Sixty women (35% Hispanic/Latino, 23% Black, 18% Asian, 15% non-Hispanic White) participated in 10 focus groups (English = 8, Spanish = 2) and 11 individual interviews (English = 7, Spanish = 4). Three themes emerged about factors that could promote participation in decentralized biospecimen collection: 1) convenience, 2) autonomy, and 3) benefit (to self, community or society). Four themes emerged about potential barriers: 1) lack of interaction with trained professionals, 2) inability to coordinate with existing clinical care, 3) discomfort and invasiveness, and 4) concerns about data transparency and security. Overall, participants felt more comfortable providing biospecimens for themselves compared to their child and with biospecimens perceived as less painful or invasive to obtain.

Our findings suggest that transparency about the purposes and use of collecting biospecimen and clear instructions (such as written and instructional videos) could improve biospecimen collection in decentralized pregnancy and birth cohorts. Additionally, opportunities for virtual interaction with study staff and options related to collection of certain biospecimens such as blood (mobile collection unit with trained staff versus a self-collection device) may also improve participant engagement.