Trial Information

Patient Perspectives on Sharing Family Medical Histories

OBJECTIVES:

- To gain an initial understanding of the ethical, family, and related concerns that
individuals may have when offered the option of providing family medical history online
for genetic risk assessment or research.

- To identify specific directions for future research into the ethics of online genetic
risk assessment.

OUTLINE: Participants undergo a 45-60 minute interview to assess their attitudes and
concerns about providing family medical history online for genetic risk assessment or
research. Participants' feelings about whether or not to use an online genetic assessment
tool (i.e., Genetic Risk Easy Assessment Tool [GREAT]) are explored. The GREAT allows for
the electronic creation, analysis, and dissemination of family histories of individuals who
may be at risk for various types of cancer. Key factors influencing a participant's use of
the tool, including concerns about confidentiality, privacy, informed consent, access to
risk information, and security of online family history databases, are explored. Ethical
issues regarding communication and agreement among family members on disclosing family
medical history are also discussed.