Genetic Risk: Whether, When, and How to Tell Adolescents

The investigators currently lack an adequate understanding of how parents and children feel
about genetic risk/status, how it is communicated, and how it influences wellbeing and family
relationships. This understanding is vital in order for genetic counselors and other health
care professionals to provide the best guidance possible to families. However, little
research has been conducted on the impact of genetic risk information or testing on children
from the perspective of the child. The research proposed here is uniquely positioned to help
fill this gap.

For this study, the investigators will interview 15-20 parent/child pairs who are at risk for
Huntington's Disease (HD), 15-20 parent/child pairs who are at risk for hereditary cancer,
and 15-20 certified genetic counselors. Interviews will last no more than one hour and will
be conducted at a time and place that is convenient for the participant. The investigators
will offer participants a choice of conducting the interview in a private conference room at
the Berman Institute of Bioethics, or remotely by Skype or telephone. Parents and children
will be interviewed separately. Parents will be asked about the decision process behind how
and when they disclosed genetic information to their child, style of family communication,
advice for other parents in similar situations, and other questions related to the subject of
communication of genetic information to minors. Children will be asked about their experience
learning genetic risk information, style of family communication, how they felt, advice for
other kids in similar situations, and other questions related to the subject of communication
of genetic information to minors.

Inclusion Criteria:

- Parents at-risk for HD, affected by HD, or be the spouse/partner of someone living who
at risk for or affected by HD.

- Parents who have or have had a diagnosis of hereditary cancer, or the spouse/partner
of someone living who has or has had had a diagnosis of hereditary cancer.

- Children ages 15-17 who are at risk for either HD or hereditary cancer

Exclusion Criteria:

- Parents and children who have not yet communicated about genetic risk

- Children younger than age 15