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

Li ST1, Sun S2, Lie D3, Met-Domestici M1, Courtney E1, Menon S1, Lim GH4, Ngeow J1,5,6.

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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.