‘Well, I knew this already’ – explaining personal genetic risk information through narrative meaning‐making

Abstract

This article presents results from a Finnish focus group's study conducted among participants of a project called GeneRISK, in which the participants received a personal risk score for having a cardiovascular event based on genetic analysis, lifestyle and laboratory results. In the discussions, interpretations of the genetic risk score and its meaning were incorporated into personal narratives of health and illness. We argue that instead of serving as an explanation for health and illness, which can help guide people's lives and choices, the genetic risk information became an object of explanation. Therefore, the risk information did not create new conceptions of personal risk, nor did it generate enough power to push people to change their lifestyles. Instead, the risk information was used to strengthen the existing impression of personal risk and the narrative of personal health and illness.

Assessing the impact of developments in genetic testing on insurers' risk exposure

“…This has been found in studies of individuals who have taken a genetic test [33,42,68,71,72] and research that presents participants with hypothetical genetic testing scenarios [47,54,60,61,73,74]. This also holds true across different types of health conditions including Alzheimer's disease, CHD, lung cancer schizophrenia and melanoma, although we did not find evidence for an increased motivation to improve lifestyle after a genetic test for cardiovascular risk and heart disease [53,55]. However, both these studies noted certain contextual factors that may increase motivation to make lifestyle changes (e.g.…”

“…In contrast to the studies outlined above, in research participants who received genetic test results for a wide range of conditions simultaneously (e.g. via DTC testing) or for specific genetic tests for cardiovascular disease, cancer, 11 obesity, arthritis or HCM, there was no evidence for changes in diet or exercise frequency over time [21,42,45,52,53,74,[76][77][78]. Based on the studies included in this review, the evidence for genetic test results having an impact on changes relating to lifestyle factors that are not targeted toward a particular condition, such as diet and exercise, is mixed.…”

“…The desire to have more knowledge about potential health risks was identified as an important motivation to seek out testing for both people that had received DTC testing [33,[40][41][42] and in other surveys where participants had not necessarily actively sought out genetic testing, but rather had received a test through participating in research cohorts or studies [43][44][45][46][47]. Obtaining information to inform adoption of behaviours or treatments to improve health, prevent disease onset or manage risk were also important motivating factors for DTC customers [33,[40][41][42] and in other survey studies [43,[45][46][47][48] and qualitative studies [49][50][51][52][53]. Several studies looked at interest in genetic testing for specific conditions and found that cancer (e.g.…”

“…One study found that people's perception of their own disease risk was not associated with uptake of genetic testing, although it was conducted only with participants from a cohort of women at high risk of breast cancer [46] and it is unclear how generalisable this finding would be to a wider population. There is also evidence from a survey and qualitative studies to suggest that family history of a genetic condition can be a motivating factor for getting genetic testing [45,53,56,57] and that people may be more interested in obtaining results for conditions that they already know occur in their family [51].…”

“…The studies reviewed suggested limited motivation to engage with healthcare professionals following a genetic test result [45,53]. However, neither of these two studies used a control group.…”