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Patient Perspectives on Sharing Family Medical Histories


N/A
18 Years
N/A
Not Enrolling
Female
Breast Cancer

Thank you

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.

Inclusion Criteria


DISEASE CHARACTERISTICS:

- Healthy women undergoing mammograms or being evaluated for a breast concern at the
University Hospitals Breast Center

PATIENT CHARACTERISTICS:

- Able to speak English

PRIOR CONCURRENT THERAPY:

- Not specified

Type of Study:

Observational

Study Design:

Observational Model: Family-Based, Time Perspective: Prospective

Outcome Measure:

Participants' perspectives and concerns regarding online genetic risk assessment or research

Safety Issue:

No

Principal Investigator

Christian Simon, PhD

Investigator Role:

Study Chair

Investigator Affiliation:

Ireland Cancer Center at University Hospitals Case Medical Center, Case Comprehensive Cancer Center

Authority:

United States: Federal Government

Study ID:

CASE1Z07

NCT ID:

NCT00530751

Start Date:

March 2007

Completion Date:

Related Keywords:

  • Breast Cancer
  • breast cancer
  • Breast Neoplasms

Name

Location

Mercy Cancer Center at Mercy Medical CenterCanton, Ohio  44708
Lake/University Ireland Cancer CenterMentor, Ohio  44060
Geauga Regional HospitalChardon, Ohio  44024
Southwest General Health CenterMiddleburgh Heights, Ohio  44130
UHHS Chagrin Highlands Medical CenterOrange Villager, Ohio  44122
University Suburban Health CenterSouth Euclid, Ohio  44121
UHHS Westlake Medical CenterWestlaker, Ohio  44145