Factors influencing the decision to share cancer genetic results among family members: an in-depth interview study of women in an Asian setting

Abstract

OBJECTIVE

Reluctance to share hereditary cancer syndrome genetic test results with family is reported among Asian patients. This study aims to explore patient factors influencing result-sharing with family, to improve overall testing uptake.

METHODS

Participants were women with a personal/family history of breast and/or ovarian cancer who received a positive, negative, or variant of uncertain significance (VUS) test result. In-depth interviews were conducted to theme saturation to explore facilitators and barriers for sharing results with family. Grounded theory with thematic analysis was applied in analysis and interpretation.

RESULTS

Twenty-four women participated. Three themes representing facilitators emerged for all results categories: family closeness; involvement of families in the testing process; and perception of low emotional impact of results. In the positive result category, two facilitator themes emerged: presence of actionable results; and perception of family members' acceptance. In the negative and VUS result categories, two themes representing barriers to sharing emerged: perception of no genetic or medical implication for family; and result ambiguity respectively.

CONCLUSIONS

Facilitators and barriers for result-sharing are similar to those among Western women. A framework to explain Asian patients' decision-making process identifies optimal counselling opportunities to enhance communication with family.

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