Stress and Uptake of Genetic Testing

It is widely recognized that feelings of stress about health lead people to be more likely to engage in risk- reducing behaviors such as stopping smoking, taking exercise, and adopting a healthy diet. The picture with regard to disease-detecting behaviors, of which having a genetic test is one example, is less clear cut.

Disease-detecting behaviors are actions that can inform the individual whether they have or are likely to develop a particular disease but that, in themselves, do not change the disease or risk status of the individual.

Similar to models of stress and behavioral performance in nonhealth domains, it has been proposed that a certain amount of perceived stress motivates the performance of disease-detection behaviors. However, high levels of perceived stress are thought to lead to a greater likelihood of fear-control strategies and the subsequent avoidance of the behavior.

Only a proportion of those offered genetic testing will decide to have the test. There are a wide variety of factors influencing this decision, including the disease being tested for and whether treatment is available, sociodemographic factors, and the expectations and motivations of the individual. Whether greater perceived stress facilitates or inhibits the uptake of the offer of genetic testing has not been widely investigated.

What is known is that people who believe they can cope with the results of genetic testing are the ones who have a greater interest in and uptake of genetic testing. In addition, people’s perceiving themselves as being at greater risk for having the gene and developing the disease is typically associated with a greater uptake of genetic testing.

In one of the early reports of genetic testing for Huntington disease, the Canadian Collaborative Study of Predictive Testing group found that participants who declined genetic testing (along with those who received uninformative test results) were the most distressed over a period of 12 months. In 1997 Caryn Lerman and colleagues explicitly tested the influence of distress on requesting the results of genetic testing for hereditary breast and ovarian cancer susceptibility.

After controlling for sociodemographic factors and objective risk, those with higher levels of cancer-specific distress were nearly three times more likely to request the results of genetic testing. No evidence of a curvilinear (inverted-U) relationship between distress and genetic testing was found, although this may be because, on the whole, participants did not have high levels of distress.

Although there are inherent difficulties in investigating whether stress predicts the uptake of genetic testing given that people who decline the offer of genetic testing are less likely to want to take part in psychological evaluations, there is clearly a need to attempt to understand this relationship. As genetic testing becomes more ubiquitous, there is a need to find out whether those who are offered genetic testing and decline it constitute a particularly vulnerable group.