McAllister M
Center for Family Research, Faculty of Social and Political Sciences, University of Cambridge, Cambridge, UK.
Clin Genet. 2003 Sep;64(3):179-89. doi: 10.1034/j.1399-0004.2003.00133.x.
From the geneticist's (or 'genetic counsellor's') perspective, lay models of inheritance can be perceived as problematic because they might interfere with understanding and acceptance of the explanation of inheritance provided in genetic counselling. The work presented here forms part of a larger qualitative grounded-theory study where the aim was to develop theory that could explain variations in adjustment to genetic testing for hereditary non-polyposis colon cancer (HNPCC). Ten of the 29 individuals interviewed who were at 50% or 25% risk used a 'personal theory of inheritance' to justify or explain a belief that they did, or did not, carry the family mutation. Two others indicated that, as a coping strategy, they chose to believe themselves to be carriers. This article presents part of the theory of engagement that was constructed using this data, relating to the process of development of risk perception. The theory suggests that for some individuals, these beliefs can form part of a process of coping and coming to terms with risk. An exploration of these processes may help practitioners to better understand the complexity of risk perception in individuals at genetic risk for cancer, particularly those preparing for predictive test results. Further development and testing of the theory is discussed.
从遗传学家（或“遗传咨询师”）的角度来看，普通的遗传模式可能会被视为存在问题，因为它们可能会干扰对遗传咨询中所提供的遗传解释的理解和接受。此处所展示的工作是一项更大规模的质性扎根理论研究的一部分，该研究旨在构建一种理论，以解释遗传性非息肉病性结直肠癌（HNPCC）基因检测适应过程中的差异。在接受访谈的29个人中，有10人处于50%或25%的患病风险，他们运用“个人遗传理论”来证明或解释自己携带或未携带家族突变的信念。另外两人表示，作为一种应对策略，他们选择相信自己是携带者。本文呈现了利用这些数据构建的参与理论的一部分，该部分与风险认知的发展过程相关。该理论表明，对于一些个体而言，这些信念可能构成应对风险并逐渐接受风险过程的一部分。对这些过程的探索或许有助于从业者更好地理解癌症遗传风险个体，尤其是那些准备接受预测性检测结果的个体的风险认知的复杂性。文中还讨论了该理论的进一步发展和验证。
