Counseling patients in the predictive genetics clinic for Huntington's disease: A qualitative analysis of ethnographic observations

Little research has been conducted on patients' experiences inside the predictive genetics clinic. In this clinic, a person with a familial risk of inheriting a rare disease seeks a test that will provide them with information about their future health. Counselors combine gentle challenges with neutral approaches to educate and counsel patients wanting to take the predictive test. We conducted ethnographic observations of predictive genetics clinics for Huntington's Disease in England and Wales. Four content categories were prominent throughout the analysis, which we present in this paper: connecting, deciding, coping, and supporting. (1) Connecting describes how discussions began with an exploration of the idiosyncrasies of the patient's connection with Huntington's Disease. (2) Deciding describes how counselors asked patients about their decision to seek referral to the predictive genetics clinic; (3) Coping describes how counselors explored whether and how the patient was likely to cope, especially with a positive (bad news) test result; and (4) Supporting describes the support patients may need if they receive such news. This article contributes to a deeper understanding of patient experience in predictive genetics clinics, which is invaluable for genetics professionals and others who support patient care. Based on this analysis, the paper underlines the importance of the elongated counseling process and the need to ensure counselors receive the training and support they require to manage such complex medical encounters.