Genetic Counseling Processes and Analogue Client Outcome

Genetic counseling provides the translational link between the new technologies of testing and the ability of individuals to engage in a process of informed decision-making. The dense and abstract nature of this information, coupled with the heightened anxiety of uncertainty and disease vulnerability that it suggests, can be overwhelming to counseling clients -- both cognitively and emotionally. Outcome studies over the past 20 years have found that a significant proportion of information is misunderstood or poorly recalled; indeed, some investigators have warned that the genetic counseling experience may be a significant psychological stressor increasing rather than diminishing disease anxiety. Despite the critical role of the counseling process to client outcomes, few outcome studies have addressed the interactive verbal and emotional processes that comprise the communication of counseling sessions. Furthermore, ethnic minorities and low literate populations are largely underrepresented among users of genetic counseling services and little is known about how to best serve these populations. The current proposal is a two-phase study designed to address these critical issues. In Phase 1, 200 genetic counselors will be recruited from meetings of the National Society of Genetic Counseling (NSGC), or through regional centers, to be videotaped while interviewing trained simulated clients seeking services related to either a) prenatal test counseling for advanced maternal age and a positive family history for cystic fibrosis, or b) susceptibility testing for BRCA1 and BRCA2 gene mutations. Simulated clients who are African American or Caucasian females will be used in interviews singly or accompanied by a male simulator acting as the client's spouse during the session. Phase 2 of the study recruits 800 subjects from ethnically, geographically, and educationally diverse populations to view the videotaped counseling sessions while imagining they are the client or the spouse being counseled. In this way, the subjects will act as analogue clients (AC) to provide a proxy for client satisfaction with the interpersonal and informational aspects of the counselor's communication, comprehension and recall and measures of anxiety.