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Genetic testing and the family.

Marcia Van Riper1

  • 1University of North Carolina at Chapel Hill, Chapel Hill, NC 27514, USA. vanriper@email.unc.edu

Journal of Midwifery & Women'S Health
|May 17, 2005
PubMed
Summary

Exploring the family experience with genetic testing, this study highlights the complex ethical and social issues families navigate. Even with negative results, genetic testing can impact individuals, relationships, and the entire family system.

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Area of Science:

  • Genetics
  • Family Studies
  • Bioethics

Background:

  • Genetic testing offers insights into inherited conditions but presents unique family challenges.
  • Understanding the family's perspective is crucial for managing the psychosocial impact of genetic testing.
  • Previous research has not fully captured the nuanced family experience of genetic testing.

Observation:

  • Two families' experiences with genetic testing for Huntington's disease and hereditary cancer were examined.
  • Case studies illustrate the ethical and social complexities encountered during the genetic testing process.
  • The study framework utilized the established family management style framework.

Findings:

  • Genetic testing impacts not only the individual but also other family members, marital relationships, and the family system.
  • Negative consequences can arise even when genetic test results are negative for a specific mutation.
  • Families actively define and manage ethical and social issues throughout the genetic testing journey.

Implications:

  • Clinical genetic services should consider the broader family context when providing testing and counseling.
  • Further research is needed to develop family-centered approaches to genetic testing.
  • Improved understanding can lead to better support for families undergoing genetic testing.

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