A qualitative study evaluating parental attitudes towards the creation of a female youth cohort (LEGACY) in the Breast Cancer Family Registry.

Publication Type:

Journal Article


Psycho-oncology, Volume 19, Issue 1, p.93-101 (2010)


Adolescent, BRCA1 Protein, Breast Neoplasms, California, Child, Cohort Studies, Female, Genetic Predisposition to Disease, Heterozygote Detection, Humans, Interview, Psychological, Motivation, Ontario, Parental Consent, Parents, Prospective Studies, Registries, Risk Assessment, Social Environment, Utah


Expanding the existing Breast Cancer Family Registry (BCFR) to enrol daughters aged 6-17 years in a prospective cohort study named LEGACY (Lessons in Epidemiology and Genetics of Adult Cancer from Youth) offers the opportunity to study the effects of genetic and environmental exposures in youth on adult breast cancer risk. Few studies have assessed parents' willingness to enroll their daughters in genetic epidemiological cohort studies. Since BCFR parents are the gatekeepers of their daughters' future enrollment, it is important to explore their interests and attitudes towards LEGACY.