Physicians communicating with women at genetic risk of breast and ovarian cancer: Are we in the middle of the ford between contradictory messages and unshared decision making?

• Published in: PloS one 2020-10, Vol.15 (10), p.e0240054-e0240054
• Main Authors: Fadda, Marta, Chappuis, Pierre O, Katapodi, Maria C, Pagani, Olivia, Monnerat, Christian, Membrez, Véronique, Unger, Sheila, Caiata Zufferey, Maria
• Format: Article
• Language: English
• Subjects: Adult; Biology and Life Sciences; BRCA1 protein; BRCA1 Protein - genetics; BRCA2 Protein - genetics; Breast cancer; Breast Neoplasms - genetics; Breast Neoplasms - pathology; Cancer; Decision Making; Disorientation; Female; Frustration; Genetic aspects; Genetic Counseling; Genetic screening; Grounded Theory; Health care; Health risks; Humans; Medical communication; Medical personnel; Medicine and Health Sciences; Messages; Methods; Middle Aged; Ovarian cancer; Ovarian carcinoma; Ovarian Neoplasms - genetics; Ovarian Neoplasms - pathology; People and Places; Physician-Patient Relations; Physicians; Physicians - psychology; Practice; Qualitative analysis; Risk communication; Risk Factors; Risk management; Social aspects; Social Sciences; Womens health
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0240054

BRCA1/2 genetic testing offers tremendous opportunities for prevention, diagnosis and treatment of breast and ovarian cancer. Women acquire valuable information that can help them to make informed decisions about their health. However, knowing one's susceptibility to developing cancer may be burdensome for several women, as this risk needs to be managed over time through a continuous dialogue with multiple healthcare professionals. We explored how communication between physicians and unaffected women carrying BRCA1/2 germline pathogenic variants was experienced by women in relation to their genetic risk. Data came from qualitative interviews conducted in Switzerland with 32 unaffected women carrying BRCA1/2 pathogenic variants and aware of their genetic status for at least 3 years. We identified three different types of message as conveyed by physicians to women: (1) a normative message, (2) an over-empowering message, and (3) a minimizing message. On one hand, we found that women are exposed to contradictory messages, often simultaneously, in their interactions with healthcare professionals during their post-genetic testing journey. On the other hand, women's reports highlighted the absence of shared decision-making in such interactions. The combination of these two findings resulted in a strong sense of disorientation, frustration, and powerlessness among participants. Healthcare professionals interacting with high cancer risk women are urged to align in favor of a both concerted and shared decision-making approach when discussing options for managing genetic risk.