d'Agincourt-Canning Lori
Hereditary Cancer Program, BCCA, British Columbia V5Z 4C2, Vancouver, Canada.
J Genet Couns. 2005 Feb;14(1):55-69. doi: 10.1007/s10897-005-1500-0.
The purpose of this study was to explore the connection between experiential knowledge of hereditary breast/ovarian cancer and understandings of personal cancer risk. Using a qualitative research design, the investigator conducted in-depth interviews with 53 individuals (45 female, 8 male) from families at high-risk for hereditary breast/ovarian cancer. Study results showed that two forms of experiential knowledge, empathetic and embodied knowledge, were integral to participants' constructions of their cancer risk. They also illustrated that knowledge derived from experience often took precedence over objective clinical estimates of risk. The paper discusses the clinical implications of these findings and suggests that counseling strategies, which expand upon patient's lived experience and knowledge of the disease, may enhance communication of genetic risk. Assessment of experiential knowledge promises to suggest new ways to frame genetic information that will enable people to better understand their objective risk or to modify exaggerated and/or inaccurate risk perceptions.
本研究的目的是探讨遗传性乳腺癌/卵巢癌的经验性知识与个人癌症风险认知之间的联系。采用定性研究设计,研究者对来自遗传性乳腺癌/卵巢癌高危家庭的53人(45名女性,8名男性)进行了深入访谈。研究结果表明,两种形式的经验性知识,即共情知识和具身知识,对于参与者构建其癌症风险至关重要。研究结果还表明,源自经验的知识往往比客观的临床风险评估更为重要。本文讨论了这些发现的临床意义,并提出扩展患者对疾病的生活经验和知识的咨询策略可能会加强遗传风险的沟通。对经验性知识的评估有望提出构建遗传信息的新方法,使人们能够更好地理解其客观风险,或修正夸大和/或不准确的风险认知。