Subjective Factors

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Cancer genetic risk information must be integrated by individuals who are often emotionally affected by a family history of cancer, life experiences and psychological characteristics which determine the understanding of the information and the perception of the risk.

3.2.2.1 Impact of Prior Experiences and Emotions

The experience of a family history of cancer is frequently associated with feelings such as fear, low self-esteem, anger, guilt, grief, and embarrassment. This experience must be taken into account as a possible barrier in the education about cancer genetic risk.

On the one hand, studies of women with a high risk for breast cancer due to a family history of the disease in first-degree relatives have found that these women experienced high levels of worry about their risk (Lerman and Schwartz 1993; Audrain et al. 1997). Levels of anxiety about cancer, on the other hand, have been shown to be associated with inaccurate perception of breast cancer risk in women at risk (Hopwood 2000).

While the emotional impact of a family experience of cancer is variable, it is likely to generate a certain amount of distress during counselling (van Dijk et al. 2004a).

3.2.2.2 Perception of Risk

Prior to genetic risk counselling, only a minority of women have an accurate perception of their risk of developing breast cancer, and the majority either overestimate or underestimate their risk (Hopwood 2000). Cross-cultural differences have been demonstrated, with a much greater risk overestimation in the USA than in the UK.

Risk overestimation is also high in Latin countries (Huiart et al. 2002; Gil et al. 2003).

Cognitive biases, individual preconceptions (and misconceptions), life experiences, cultural context, the subject's general outlook (e.g. pessimism, locus of control), as well as social biases, such as family history and related beliefs of being vulnerable, may also influence the interpretation of risk information (Bottorff et al. 1998).

Providing up-to-date and accurate risk estimates to the counselee is one of the main goals of genetic counselling; but how is cancer risk perceived after counselling?

Studies evaluating risk perception vary widely in their definition of risk accuracy leading to inconsistent results (Hopwood et al. 2003b; van Dijk et al. 2004a). In a 1-year prospective study of 158 women aged 18-45 years with a confirmed lifetime risk of breast cancer of 1 in 6 or greater, the proportion of women with accurate personal risk perceptions based on "gambling" odds (1 chance in x) significantly improved after risk counselling (Hopwood et al. 2003b). "Gambling" odds was the method of reporting perceived risk with the best level of risk accuracy and women preferred this format. However, the concept of lifetime risk was understood by only 44% of counselees.

Using open-ended, semi-structured face-to-face interviews, van Dijk and coworkers (2004a) showed that the level of risk perception accuracy depended on the leniency of the criterion applied, being either an exact match with the verbal label or more global high versus low level of risk estimation.

In a prospective study performed on 108 women receiving genetic counselling, women's risk perceptions after counselling were significantly lower than pre-counselling, but still significantly higher than the actual risk information communicated (Gurmankin et al. 2005).

Kelly and coworkers (2004) examined changes in perceived breast cancer risk from post-counselling (1-2 days after counselling) to post-result (1 week after receipt of test results), and found that the perceived risk decreased in those tested negative, but remained unchanged in those tested positive. They concluded that individuals may assume that they have a hereditary mutation until they receive contrary test results; this may be interpreted as a coping method of assuming the worst in order to manage anxiety or as defensive pessimism.

In conclusion, van Dijk and coworkers (2004a) emphasized that the level of perceived risk accuracy might be a limited outcome for assessing the effectiveness of genetic counselling and that it would be preferable to identify which emotions, cognitions, and behavioural intentions are elicited by the risk information and whether they are congruent with the goals of counselling (i.e. adopting medically appropriate behaviours, reporting a moderate level of distress after counselling).

3.2.2.3 Messenger Role

A further difficulty involves communication of cancer genetic information within the family. The counselee becomes a messenger of sensitive information to other family members. However, little is known about this process (Tercyak et al. 2001, 2002; Blandy et al. 2003).

While cancer genetic counselling is addressed to an individual, it also concerns the whole family. At first sight, the person who consults may appear to be the person primarily concerned, but the implications obviously surpass the individual case. As already discussed, the subject expects a result from the visit (answers to questions about the cause of the disease, reduction of the anxiety related to uncertainty, information concerning prevention, etc.), but there are no genetics without family and the information therefore inevitably concerns the person's descendents, ascendants, as well as other members of her own generation.

This observation raises the very complex question concerning ownership of the information: does this information belong exclusively to the one who consults or does it immediately belong to the whole family? Is the person aware of this twofold ownership and/or has the rest of the family already questioned a possible genetic predisposition?

These ethical issues have a number of consequences on the practical organization of cancer genetic counselling and must be investigated before performing the test, especially before pro viding the results. A thorough investigation of the personal motivations, as well as perception of the implications for the rest of her family, has therefore to be an integral part of genetic counselling.

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