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Autonomy and social influence in predictive genetic testing decision-making: A qualitative interview study

Bettina M Zimmermann1,2, Insa Koné1, David Shaw1,3

  • 1Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.

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Summary

Keywords:
decision-makinggenetic counsellinggenetic screening/testingprinciple of respect for autonomyrelational autonomy

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Area of Science:

  • Genetics and Bioethics
  • Decision-Making in Healthcare

Background:

  • Traditional autonomy in decision-making involves intentionality, understanding, and non-control.
  • A relational view of autonomy is increasingly recognized in genetic contexts.
  • Predictive genetic testing for cancer predisposition involves complex personal and social factors.

Purpose of the Study:

  • To empirically assess social influences on genetic testing decisions.
  • To connect these influences with principlist and relational autonomy theories.
  • To analyze decision-making processes in predictive genetic testing for cancer.

Main Methods:

  • Qualitative analysis of interviews with 18 adult genetic counsellees and 2 physicians in Switzerland.
  • Grounded theory approach applied to decision-making in predictive genetic testing.
  • Exploration of social influences and their relation to autonomy theories.

Main Results:

  • Some individuals pursued genetic testing due to family pressure, sometimes against personal beliefs.
  • Others made individualistic choices but faced challenges explaining them to relatives.
  • Healthcare professionals influenced decisions significantly, generally without perceived manipulation, though coercion and social pressure were noted.

Conclusions:

  • Predictive genetic testing decisions integrate both relational and individualistic aspects, compatible with autonomy.
  • Principlist and relational autonomy theories offer complementary perspectives on genetic testing decisions.
  • Improving social acceptance of test refusal and encouraging self-determination regarding social influence are crucial.