title: Talking to children about maternal BRCA1/2 genetic test results: a qualitative study of parental perceptions and advice.
abstract: Family communication is the primary, initial means of educating the next, at-risk generation about hereditary cancer risk. In this study, in-depth parent narratives provided self-report of motivations, planning, satisfactions and regrets associated with sharing or not sharing maternal BRCA1/2 test results with young children and advice for parents considering disclosure and for genetic counselors. Interviews were conducted with 32 mothers tested for BRCA1/2 with children ages 8-21 years and 24 of their co-parents; interview narratives were analyzed qualitatively. Parents were concerned with both protecting and educating children about hereditary cancer risk. They expressed confidence that parents can constructively convey genetic information to minor children. Telling relieved most parents and satisfied a sense of parental duty. Parents strongly advised child-specific, age-appropriate tailoring of genetic information and emphasized conveying the positive, preventive utility of genetic information to children. Immunizing effects of disclosure were viewed as providing forewarning about and preparation for possible later family cancer diagnoses. Parents choosing not to tell children were advised to consider future disclosure. Narratives about parental sharing of BRCA1/2 test results with minor children support the feasibility of parental discussion of maternal genetic test results to the next at-risk generation. Results suggest development of intervention tools for parents would support decision-making and family communication and potentially reduce parental worry and regret. Recommendations are made for more active involvement by genetic counselors with tested parents around the topic of delivery of genetic information to children.
authors.affiliation: Dana-Farber Cancer Institute, Harvard Medical School, 450 Brookline Avenue, Boston, MA 02215, USA. andrea_patenaude@dfci.harvard.edu
authors.forename: Andrea
authors.initials: A
authors.lastname: Farkas Patenaude
authors.forename: Tiffani A
authors.initials: TA
authors.lastname: DeMarco
authors.forename: Beth N
authors.initials: BN
authors.lastname: Peshkin
authors.forename: Heiddis
authors.initials: H
authors.lastname: Valdimarsdottir
authors.forename: Judy E
authors.initials: JE
authors.lastname: Garber
authors.forename: Katherine A
authors.initials: KA
authors.lastname: Schneider
authors.forename: Larissa
authors.initials: L
authors.lastname: Hewitt
authors.forename: Jennifer
authors.initials: J
authors.lastname: Hamilton
authors.forename: Kenneth P
authors.initials: KP
authors.lastname: Tercyak
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers; D010287:Parent-Child Relations; D036301:Qualitative Research; D055815:Young Adult