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Genetic testing and family entanglements.

Rebecca Dimond1, Shane Doheny1, Lisa Ballard2

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Summary
This summary is machine-generated.

Understanding genetic testing requires considering family context. Individual experiences with genetic diseases and technologies are deeply intertwined with family dynamics and communication practices.

Keywords:
CommunicationEntanglementFamilyGenetic testingHuntington's diseaseSocial scienceUnited Kingdom‘New genetics’

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Area of Science:

  • Social science
  • Genetics
  • Medical sociology
  • Science and technology studies

Background:

  • The 'new genetics' era, beginning in the early 1990s, necessitated patient and family navigation of genetic testing.
  • Over thirty years of social science research has examined attitudes and responses to genetic technologies.
  • Individual genetic disease experiences and technology responses are context-dependent.

Purpose of the Study:

  • To explore the multifaceted ways family influences the patient experience of genetic testing.
  • To analyze the interplay between family dynamics and genetic testing decisions and outcomes.
  • To understand the context-specific nature of genetic disease and technology engagement.

Main Methods:

  • Literature review focusing on family studies across sociology, science and technology studies, and anthropology.
  • Qualitative analysis of interviews with individuals who underwent predictive genetic testing.
  • Thematic analysis identifying five key themes related to family involvement in genetic testing.

Main Results:

  • Identified five emergent themes: family disclosure, gatekeeping, the decision to test, communication practices, and receiving negative results.
  • Demonstrated that family context is crucial for understanding individual responses to genetic testing.
  • Highlighted the complex communication patterns and decision-making processes within families regarding genetic information.

Conclusions:

  • Family and genetics are intricately entwined, best understood through the concept of entanglement.
  • The study underscores the need to consider familial relationships when examining genetic testing experiences.
  • Future research should further explore the 'entanglement' of family and genetic factors in health and disease.