Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference?

Abstract

Low rates of genetic counseling among African American women have generated concerns about disparities; however, to the extent that women's decisions to accept or decline counseling are consistent with their values, then lower participation may reflect preferences and not disparities. We evaluated the extent to which women were satisfied with their decision about participating in genetic counseling for BRCA1/2 mutations and identified variables that were associated significantly with satisfaction. Prospective study of decision satisfaction with 135 African American women who had a minimum 5% prior probability of having a BRCA1/2 mutation. Decision satisfaction was evaluated one month after women were offered participation in genetic counseling using a structured questionnaire. Women were satisfied with their participation decision; more than 80% reported that their decision was consistent with their family values. However, women who declined pre-test counseling had significantly lower satisfaction scores. Our findings highlight the importance ensuring that racial differences that are due to preferences and values are not misclassified as disparities in order to identify and address the root causes of disparate treatment.

Trial registration: ClinicalTrials.gov NCT00419510.

Conflict of interest statement

CONFLICT OF INTEREST

The authors do not have any conflict of interests.

Figures

Figure 1

Satisfaction with Testing Decisions* *n=44 women who received BRCA1/2 test results; Mean (SD) Satisfaction 18.6 (1.9)