title: 'Cancer doesn't have an age': genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24.
abstract: Increasingly, 18-24-year-old women from hereditary breast/ovarian cancer (HBOC) families are pursuing genetic testing, despite their low absolute risks of breast and ovarian cancer and the fact that evidence-based management options used with older high-risk women are not generally available. Difficult clinical decisions in older carriers take on substantially more complexity and value-laden import in very young carriers. As a result, many of the latter receive highly personal and emotionally charged cancer risk information in a life context where management strategies are not well defined. We analyzed 32 in-depth interviews with BRCA1/2 mutation-positive women aged 18-24 using techniques of grounded theory and interpretive description. Participants described feeling vulnerable to a cancer diagnosis but in a quandary regarding their care because evidence-based approaches to management have not been developed and clinical trials have not been undertaken. Our participants demonstrated a wide range of genetic and health literacy. Inconsistent recommendations, surveillance fatigue, and the unpredictability of their having health insurance coverage for surgical risk-reducing procedures led several to contemplate risk-reducing mastectomy before age 25. Parents remained a primary source of emotional and financial support, slowing age-appropriate independence and complicating patient privacy. Our findings suggest that, for 18-24-year-olds, readiness to autonomously elect genetic testing, to fully understand and act on genetic information, and to confidently make decisions with life-long implications are all evolving processes. We comment on the tensions between informed consent, privacy, and the unique developmental needs of BRCA1/2 mutation-positive women just emerging into their adult years.
authors.affiliation: New York University, USA. awernerlin@nyu.edu
authors.forename: Allison
authors.initials: A
authors.lastname: Werner-Lin
authors.forename: Lindsey M
authors.initials: LM
authors.lastname: Hoskins
authors.forename: Maya H
authors.initials: MH
authors.lastname: Doyle
authors.forename: Mark H
authors.initials: MH
authors.lastname: Greene
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D019313:BRCA1 Protein / Q000302:isolation & purification; D024682:BRCA2 Protein / Q000302:isolation & purification; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology / Q000601:surgery; D017558:Elective Surgical Procedures; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D005820:Genetic Testing; D006801:Humans; D008962:Models, Theoretical; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology; D036301:Qualitative Research; D040242:Risk Reduction Behavior; D012944:Social Support; D055815:Young Adult
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human