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

• Main Authors: Li, Shao-Tzu, Sun, Shirley, Lie, Désirée, Met-Domestici, Marie, Courtney, Eliza, Menon, Sapna, Lim, Geok Hoon, Ngeow, Joanne
• Other Authors: School of Social Sciences
• Format: Article
• Language: English
• Published: 2019
• Subjects: Social sciences::Sociology::Family, marriage and women; Cancer Genetics; Oncology
• Online Access: https://hdl.handle.net/10356/85531; http://hdl.handle.net/10220/49223
• Institution: Nanyang Technological University

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 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, 2 facilitator themes emerged: presence of actionable results and perception of family members' acceptance. In the negative and variant of uncertain significance result categories, 2 themes representing barriers to sharing emerged: perception of no genetic or medical implication for family and result ambiguity.Conclusion: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.