Next Generation Education for Prevention: Defining Educational Needs, Attitudes, Concerns, Life Plans of 18 to 24 Year Old Daughters of BRCA1/2 Mutations Carriers
Abstract
Data from this study has the potential to answer an important question about genetic testing, i.e. what do those who are told by a relative, especially those informed as children, understand about hereditary breast cancer and what are the gaps or misperceptions in their knowledge? Are the gaps sufficient to cause us to challenge the present mode of spreading family information about hereditary risk by word of mouth through relatives? Are there ethical, more flexible models professionals we might adopt? We know that not all relatives are informed and that while much telling occurs soon after testing, in some cases, it is delayed many years. We know that parents who are mutation carriers worry most about impact on their children, yet we know little or nothing about what those children understand. We believe that an educational intervention to help inform young women as they come to an age at which they can make independent decisions about genetic testing would be valuable and potentially life-saving in its impact, encouraging them to seek genetic counseling and testing and to consider earlier and with more accurate information, the choices they face with regard to their hereditary cancer risk.
Document Details
- Document Type
- Technical Report
- Publication Date
- Mar 01, 2010
- Accession Number
- ADA534001
Entities
People
- Andrea F. Patenaude
Organizations
- Dana–Farber Cancer Institute