Non-Directiveness and Authenticity in the Predictive Genetic Clinic

Area of Science:

• Sociology of Health and Illness
• Medical Sociology
• Genetics and Identity

Background:

• Predictive genetic testing clinics facilitate access to genetic tests for dominantly inherited diseases.
• Social science literature has overlooked the sociology of identity within these clinics.
• Focus is on how healthy patients at risk perceive a future identity of illness.

Purpose of the Study:

• To highlight the importance of identity in predictive genetic testing.
• To examine how patients authenticate their decision to undergo testing for Huntington's Disease (HD).
• To explore authentic decision-making through the lens of Habermas's theory.

Main Methods:

• Qualitative analysis of patient decision-making processes.
• Examination of four themes: vouching, calibrating, reassuring, and projecting.
• Analysis of the role of non-directive counselling in decision authentication.

Main Results:

• Patients assert their desire for the test and their ability to cope with positive results.
• Decision authentication involves vouching, calibrating, reassuring, and projecting.
• Non-directive counselling aids articulation and probing of decisions but risks hindering authenticity.

Conclusions:

• Identity and the anticipation of future illness are crucial in predictive genetic testing.
• Authentic decision-making is a complex process involving personal and social factors.
• Counselling must support, not hinder, the patient's authentication of their testing decision.