Clinical trial NCT00530751: Views on Sharing Family Medical History in Healthy Women Undergoing Mammograms or Breast Evaluation
Official title: Patient Perspectives on Sharing Family Medical Histories
Study type: OBSERVATIONAL
Overall status: WITHDRAWN
Conditions: Breast Cancer
Keywords: breast cancer
Lead sponsor: Case Comprehensive Cancer Center
Sponsor class: OTHER
Collaborators: name: National Cancer Institute (NCI)
First posted: 2007-09-17
Enrollment: 0
Sex: FEMALE
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: FAMILY_BASED
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Primary care center

Brief summary: 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.

Detailed description: 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.

Eligibility 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

Primary outcomes:
measure: Participants' perspectives and concerns regarding online genetic risk assessment or research
measure: Identification of directions for future research into the ethics of online genetic risk assessment or research
Secondary outcomes:
Other outcomes:
Locations:
city: Canton
country: United States
facility: Mercy Cancer Center at Mercy Medical Center
state: Ohio
city: Chardonr
country: United States
facility: Geauga Regional Hospital
state: Ohio
city: Mentor
country: United States
facility: Lake/University Ireland Cancer Center
state: Ohio
city: Middleburgh Heights
country: United States
facility: Southwest General Health Center
state: Ohio
city: Orange Villager
country: United States
facility: UHHS Chagrin Highlands Medical Center
state: Ohio
city: South Euclid
country: United States
facility: University Suburban Health Center
state: Ohio
city: Westlaker
country: United States
facility: UHHS Westlake Medical Center
state: Ohio
Study officials:
affiliation: Ireland Cancer Center at University Hospitals Case Medical Center, Case Comprehensive Cancer Center
name: Christian Simon, PhD
role: STUDY_CHAIR
References: