A balancing act: Non-directive communication, risk perceptions, and meeting patient needs in genetic counseling: A South African case study.

Abstract

Genetic counseling (GC) traditionally follows a non-directive counseling approach. Although a cornerstone of GC teaching and theory, there has been debate on whether GC is, can be, or should be a patient-led service due to challenges in practice, as well as the advancement and complexity of genetic testing. Personal risk perceptions and patient expectations within particular contexts may further affect how genetic counselors discuss risk information, even while attempting to remain neutral. Less is known about the process of GC communication in non-Western settings. This paper presents empirical evidence from a South African prenatal GC consultation where tensions become apparent due to differing risk perceptions and expectations between a genetic counselor and a patient, which ultimately impacts non-directive communication practice. The case study forms part of a larger qualitative study focusing on risk and uncertainty communication within GC consultations in Cape Town, South Africa. A blended sociolinguistic approach drawing on principles of conversation analysis (CA) and theme-orientated discourse analysis (TODA) provides evidence of the complexity of imparting risk information and challenging patients to reflect on their decision-making, whilst refraining from sharing personal risk perceptions during everyday practice. The case study demonstrates how a genetic counselor may become implicitly and explicitly directive in their communication approach within the same consult which may reveal their personal risk perceptions on the matter discussed. In addition, the case study reveals how a genetic counselor may grapple with the dilemma of honoring the non-directive guidelines of the profession, whilst simultaneously supporting a patient who requests advice. The ongoing debate on non-directive counseling, decision-making, and patient care in GC is important for the reflection and development of the profession to understand how to assist and support patients facing sensitive and difficult decisions, in a meaningful, and contextually-tailored manner.