What does "a gene for heart disease" mean? A focus group study of public understandings of genetic risk factors

Abstract

There is growing concern in the medical community about potential genetic determinism in the patient population. Limited information about the public understanding of genetic factors in disease formation is available. To access public perceptions of potentially deterministic phrasing of genetic risk factors, we sought to establish interpretations of the phrase, "a gene for heart disease." Focus groups in urban, suburban, and rural communities were conducted from July through October, 2001 in Georgia. A total of 108 participants were recruited. Participants were recruited to balance sex and racial representation. We used three outcome measures for participants understandings of the phrase: (1) participants' statements of the meaning of the phrase; (2) the level of determinism assigned to genetic factors by participants; and (3) participant reports of the health consequences of having "a gene for heart disease." Participants did not report a single interpretation of the phrase. There were dominant participant interpretations under each outcome measure: (1) "a gene for heart disease" was interpreted as meaning genetic and environmental factors both played roles in disease formation; (2) genetic predisposition was perceived as heightened, not absolute, risk; (3) the perceived health impact was a greater risk of becoming sick. Minority interpretations were found under each measure. Overall, naming "a gene for heart disease" does not appear to have a deterministic impact on a plurality of participants' perceptions of risks associated with genetic factors. Genetic fatalism in patient populations may be confined to a sizable minority. Important considerations for provider intervention and patient education are indicated.