How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study

Area of Science:

• Medical Genetics
• Psychosocial Oncology
• Decision Science

Background:

• Genetic testing for cancer predisposition is complex.
• Decision-making processes for genetic testing are not well understood in Switzerland.
• Effective genetic counseling requires insight into patient needs and expectations.

Purpose of the Study:

• To develop a theory explaining individual decision-making regarding genetic testing for cancer predispositions.
• To provide medical geneticists and genetic counselors with insights into counsellees' needs.
• To understand the factors influencing these complex decisions.

Main Methods:

• Grounded theory approach used for data analysis.
• Interviews conducted with individuals at risk for hereditary cancers who received genetic counseling.
• Study conducted in a clinical setting in Switzerland.

Main Results:

• A "control-fate continuum" significantly influences genetic testing decisions.
• Individual life philosophy regarding control versus fate impacts choices.
• Psychosocial factors like seeking certainty, anticipating consequences, social influence, risk perception, and decision style modulate this continuum.

Conclusions:

• The proposed "control-fate continuum" theory offers a framework for understanding genetic testing decisions for cancer predisposition.
• The theory accounts for both individuals who accept and decline testing.
• This framework can help healthcare professionals anticipate challenges and tailor genetic counseling services.