Non‐Directiveness and Authenticity in the Predictive Genetic Clinic

TL;DR

This paper explores how patients in genetic clinics make authentic decisions about predictive testing for Huntington's Disease.

Contribution

The paper introduces a framework for understanding authenticity in genetic testing decisions through four themes.

Findings

Patients authenticate their decision to take a predictive genetic test by asserting their ability to cope with bad news.

Non-directive counselling allows patients to express authenticity but may undermine social and familial influences.

Four themes—vouching, calibrating, reassuring, and projecting—describe authentic decision-making in genetic clinics.

Abstract

The predictive genetic clinic is a space where counsellors use non‐directive counselling to facilitate asymptomatic patients at risk of carrying a dominantly inherited disease access a predictive genetic test. The social science literature has a history of examining practices within this clinic, but with little attention from the sociology of identity. In this paper, we highlight the importance of identity within these clinics by examining how currently healthy patients anticipate the prospect of a future identity of illness and death. We do this by examining how patients authenticate a decision to take a predictive genetic test for Huntington's Disease (HD). In deciding to take this test, a patient simultaneously asserts that they want the test, and they will be able to cope with a positive (bad news) test result. Positioning this as a claim to authenticity using Habermas, we explore authentic decision making through four themes—vouching, calibrating, reassuring and projecting. Non‐directive counselling provides space for patients to articulate the authenticity of their decision while enabling counsellors probe their decision. However, counselling risks hindering authentic decision making and may devalue the social and familial as bases for efforts to authenticate.