Views on Sharing Family Medical History in Healthy Women Undergoing Mammograms or Breast Evaluation
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.
|Study Design:||Observational Model: Family-Based
Time Perspective: Prospective
|Official Title:||Patient Perspectives on Sharing Family Medical Histories|
- 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
|Study Start Date:||March 2007|
|Primary Completion Date:||October 2008 (Final data collection date for primary outcome measure)|
Other: counseling intervention
- 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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00530751
|United States, Ohio|
|Mercy Cancer Center at Mercy Medical Center|
|Canton, Ohio, United States, 44708|
|Geauga Regional Hospital|
|Chardonr, Ohio, United States, 44024|
|Lake/University Ireland Cancer Center|
|Mentor, Ohio, United States, 44060|
|Southwest General Health Center|
|Middleburgh Heights, Ohio, United States, 44130|
|UHHS Chagrin Highlands Medical Center|
|Orange Villager, Ohio, United States, 44122|
|University Suburban Health Center|
|South Euclid, Ohio, United States, 44121|
|UHHS Westlake Medical Center|
|Westlaker, Ohio, United States, 44145|
|Study Chair:||Christian Simon, PhD||Ireland Cancer Center at University Hospitals Case Medical Center, Case Comprehensive Cancer Center|