The specific aims are to explore the effects and describe the experience within families of disclosure and non-disclosure of genetic risk information; to describe how information about genetic risk for breast cancer flows through a family network; to explore the significance of cultural and social class variations and other barriers or enhancers of information flow and its effects; and to explore the tensions between individual rights to privacy and moral obligations to disclose to biologic relatives. This last issue will be addressed by a policy group of major thinkers in the area of bioethics and genetic disclosure who will be convened to closely query the data collected and who will work on policy related interpretations.
| Lindor, Noralane M; Petersen, Gloria M; Hadley, Donald W et al. (2006) Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review. JAMA 296:1507-17 |
