Parental Attitudes Towards Prenatal Genetic Testing For Sickle Cell Disease

Abstract

Uptake of prenatal genetic testing (PGT) is low among those with sickle cell disease (SCD). This study evaluated the association of knowledge and attitudes towards prenatal genetic counseling (PGC), awareness of posttesting intervention options and omission bias with attitudes towards PGT. In addition, we explored changes among knowledge, attitudes, and awareness of options following exposure to an educational, clinical vignette among parents of children with SCD. Parents (n=44) completed a questionnaire and an educational, clinical vignette presenting a detailed account of a pregnant woman with sickle cell trait seeking PGT and PGC was read to each participant. t Tests, Spearman correlations, multivariable regressions, and moderation/mediation analyses were used. More positive attitudes towards PGC (P=0.01), lesser tendency of omission bias (P<0.01) and private insurance (P=0.04) were significant correlates of more positive attitudes towards PGT. Omission bias mediated the relationship of attitudes towards PGC and attitudes towards PGT (95% confidence interval: 0.13, 3.03). Awareness of options (P=0.02), knowledge of PGC (P=0.01) and knowledge of PGT (P=0.01) significantly improved after exposure to the clinical vignette. Patients and families with SCD can benefit from education about the importance of prenatal diagnosis to improve attitudes, address omission bias and promote more informed decisions of PGT.

Sickle cell trait and the potential risk of severe coronavirus disease 2019—A mini‐review

“…Increasing the public awareness of sickle‐related complications may also embolden individuals who are aware of their carrier status to seek medical assessment early for COVID‐19. Recent prenatal research data suggest that many sickle cell carriers may not view SCD as a severe disorder 75 ; therefore, it is possible that individuals who have sickle cell trait may benefit from an improved awareness of sickle‐related complications, particularly during the COVID‐19 pandemic.…”

What would I do? Perspectives on the factors underlying Lynch syndrome genetic testing and results sharing decisions for high‐risk colorectal cancer patients

“…We found that individuals perceive wanting to know one's LS status, informing family members of their LS risk, and implications involved and prenatal genetic testing have illustrated benefits of using vignettes for facilitating decision-making. 24,25 These findings suggest the scenarios used in this study could be valuable as an informational decision-aid with potential application in LS or modification for other settings.…”

“…These were unintended positive consequences of the scenario‐based interview and suggest the unfolding scenarios may have created an immersive and relatable learning environment, with interview questions enabling participants to apply their knowledge. Studies in the context of BRCA1/BRCA2 and prenatal genetic testing have illustrated benefits of using vignettes for facilitating decision‐making 24,25 . These findings suggest the scenarios used in this study could be valuable as an informational decision‐aid with potential application in LS or modification for other settings.…”

The Perception of Premarital Genetic Screening within Young Jordanian Individuals

“…This fraction of the population might also have insufficient knowledge regarding genetic testing and PGS. In support of this, the positive attitude toward genetic testing has been shown to be associated with knowledge about genetic diseases and genetic testing [24]. In addition, the incorporation of PGS-related information into high school health packages as in the case of India and Canada, or as part of the university entry along with health education on hereditary diseases and consanguineous marriages could enhance the positive perception about PGS in the population [25].…”