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Previving: How Unaffected Women with a BRCA1/2 Mutation Navigate Previvor Identity.

Hannah Getachew-Smith1, Amy A Ross1, Courtney L Scherr1

  • 1Department of Communication Studies, Northwestern University.

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Women with BRCA mutations, who haven't had cancer, are called "previvors." This study explores how these previvors define and embrace their identity, impacting communication for high-risk individuals.

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Area of Science:

  • Genetics
  • Psychology
  • Oncology

Background:

  • BRCA1/2 mutations confer high lifetime risk for hereditary breast and ovarian cancers.
  • Positive BRCA test results significantly impact a woman's identity and life trajectory.
  • The term 'previvor' identifies individuals with BRCA mutations who have not yet been diagnosed with cancer.

Purpose of the Study:

  • To explore how unaffected BRCA-positive women navigate and define their previvor identity.
  • To understand the diverse interpretations and acceptance levels of the previvor label among at-risk women.
  • To inform communication strategies for BRCA carriers without a cancer diagnosis.

Main Methods:

  • Semi-structured interviews were conducted with 25 unaffected BRCA-positive women.
  • Qualitative data analysis explored participants' definitions, acceptance, and identification with the previvor label.
  • The study focused on the lived experiences of women managing hereditary cancer risk.

Main Results:

  • Participants exhibited varied definitions and levels of acceptance (acceptance, rejection, ambivalence) of the previvor identity.
  • Individual identification as a previvor differed among the women studied.
  • The study highlights the complex psychosocial impact of BRCA mutations on unaffected women.

Conclusions:

  • Understanding the previvor identity is crucial for effective communication and support for BRCA carriers.
  • Tailored communication approaches can better address the unique needs of women identified as previvors.
  • Further research can refine support systems for individuals managing hereditary cancer risk.