RATIONALE: Learning about the concerns that individuals may have about providing family medical history online for genetic risk assessment or research may help doctors plan future research. PURPOSE: This clinical trial is studying views on sharing family medical history in healthy women undergoing mammograms or breast evaluation.
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.
Study Type
OBSERVATIONAL
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.
Mercy Cancer Center at Mercy Medical Center
Canton, Ohio, United States
Geauga Regional Hospital
Chardonr, Ohio, United States
Lake/University Ireland Cancer Center
Mentor, Ohio, United States
Southwest General Health Center
Middleburg Heights, Ohio, United States
Participants' perspectives and concerns regarding online genetic risk assessment or research
Identification of directions for future research into the ethics of online genetic risk assessment or research
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UHHS Chagrin Highlands Medical Center
Orange Villager, Ohio, United States
University Suburban Health Center
South Euclid, Ohio, United States
UHHS Westlake Medical Center
Westlaker, Ohio, United States