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Women’s preferences for and experiences with prenatal genetic testing decision making: Sociodemographic disparities in preference-concordant decision making

Abstract

Objective

To investigate women's preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience.

Methods

We conducted a secondary analysis of data from two randomized trials conducted between 2007-2012. Survey items assessed participants' preferred approach to decision making and whether they experienced a preference-concordant decision process. Logistic regression estimated relationships between patient characteristics and these outcomes.

Results

56% of women preferred autonomous decision making, 39% preferred shared decision making, and 5% preferred a provider-driven approach. Only 57% experienced preference-concordant decision making. On bivariate analysis, black women, Spanish-speaking Latinas and women with less education were less likely to experience this outcome than white, more educated women. Numeracy and preferring a provider-driven approach fully mediated observed disparities in preference-concordant decision making for most participants, except for Spanish-speaking Latinas, who were still less likely to have experienced this outcome after accounting for these factors.

Conclusion

Numeracy, preference for provider-driven decision processes, and language barriers were key drivers of disparities in preference-concordant decision making.

Practice implications

Given the values-sensitive and quantitative nature of prenatal testing decisions, nuanced counseling and interventions to address language barriers, numeracy gaps, and decision-making preferences are needed to tailor counseling to patient's backgrounds and desires.

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