Evidence map›Paper›PMID 41609384›Full record

ArticleSociology of health & illness2026

Non-Directiveness and Authenticity in the Predictive Genetic Clinic.

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

Abstract read
In one paragraph

Article in Sociology of health & illness, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Shane DohenyDivision of Cancer & Genetics, Cardiff University Institute of Medical Genetics, School of Medicine, Heath Park, Cardiff, Wales, UK.
Rebecca DimondSchool of Social Sciences, Cardiff University, Cardiff, Wales, UK.
Lisa BallardClinical Ethics Law and Society, University of Southampton, Southampton, UK.
Anneke LucassenNuffield Department of Medicine, Centre for Personalised Medicine, University of Oxford, Oxford, UK.
Angus ClarkeDivision of Cancer & Genetics, Cardiff University Institute of Medical Genetics, School of Medicine, Heath Park, Cardiff, Wales, UK.

Funding

Economic and Social Research Council ES/R003092/1
6 · The paper itself

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.

Indexed as

Decision MakingGenetic CounselingGenetic TestingHuntington DiseaseHumansauthenticityhabermasnon‐directive counsellingpredictive genetic test

Identifiers

PMID41609384
PMCPMC12854100

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.