Non‐Directiveness and Authenticity in the Predictive Genetic Clinic

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.

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Publication Details

Journal
Sociology of Health & Illness
Published
2026-01-29
DOI
https://doi.org/10.1111/1467-9566.70149
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
0.00

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article

Non‐Directiveness and Authenticity in the Predictive Genetic Clinic

Lisa Ballard, Rebecca Dimond, Anneke Lucassen, Shane Doheny et al.
Sociology of Health & Illness
BRCA gene mutations in cancer
article

Non‐Directiveness and Authenticity in the Predictive Genetic Clinic

Lisa Ballard, Rebecca Dimond, Anneke Lucassen, Shane Doheny, Angus Clarke
article en

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.

Sociology of Health & IllnessVol. 48(2)
Nuffield Orthopaedic Centre (GB), University of Oxford (GB), University of Southampton (GB), Cardiff University (GB), University of Wales (GB)
Economic and Social Research Council
Peace, Justice and strong institutions
Openalex Percentile: Top 69%
BRCA gene mutations in cancer
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