(371) One Key Question® ascertainment of pregnancy intention and participation in genetic testing/research among Puerto Ricans

Peri-pregnancy is a unique opportunity for genetic testing (GT) in clinical care and for inclusion of pregnant people in genetic research (GR). Equitable inclusion of people self-identifying as Puerto Rican (PR) in GT/GR is complicated by historical scientific abuses, mistrust, and minoritization, placing PR at risk of distributional injustice in being excluded from GT/GR from which they could benefit. We aimed to ascertain likelihood of participation in GT/GR among non-pregnant PR women of reproductive age who hope to become pregnant in the next year.

Study Design:

We conducted a nested analytical cross-sectional study of social determinants of GR/GT participation among people who self-identified as non-pregnant PR women age 21-49. We used One Key Question® to ascertain pregnancy intention in the next year. We used two beliefs scores (GT and GR), and participation in GT/GR using 5-point Likert scales. 

Results:

Among 321 eligible people, 13.9% (n=49) hoped to become pregnant in the next year, 79.0% (256) did not want to become pregnant, and 6.2% (20) were ambiguous. Those living in Puerto Rico were 50% more likely than those in the USA to participate in GR (p< 0.001). In the USA, those intending pregnancy were significantly more likely to participate in GR than those not intending pregnancy. In Puerto Rico, GT/GR participation rates for both intent groups were high and not significantly different. In Puerto Rico, women intending pregnancy within the next year had similarly high levels of positive GR beliefs and GT beliefs as others, while in the USA, only women intending pregnancy within the next year had significantly more positive levels of both.

Conclusion:

PR hoping to become pregnant in the next year have high rates of intending to participate in GT/GR, with GR interest higher in Puerto Rico. This interest provides a unique opportunity to engage people intending pregnancy in efforts toward participating in GT/GR, aiming to improve PR inclusion in GT clinical benefits while contributing to GR involving unique tissues of pregnancy (e.g., placenta, cord blood), and reducing distributional injustice.