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Family Communication of Hereditary Cancer Risk Among African Americans

18 Years
Not Enrolling
Ovarian Neoplasm, Cancer Genetics, Breast Cancer

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Trial Information

Family Communication of Hereditary Cancer Risk Among African Americans

The ways in which family members communicate with one another about hereditary cancer risk
may have a significant impact on screening use and choices about predictive genetic testing.
There have been many studies examining aspects of family communication of hereditary cancer
risk but few have included a significant number of African American families. The lack of
studies addressing how African American patients communicate about genetic risks for cancer
with their relatives is a hindrance to facilitating communication strategies in this patient
population. The proposed study is a mixed methods investigation aimed at understanding how
communication of hereditary breast and ovarian cancer risk occurs in African American
families. This study will seek to describe how African American women communicate with
their family members about the information received during the genetic counseling process
for BRCA1/2 genetic testing by analyzing data from two sources. The data collected from
data source one of this study will be from female analogue clients who were recruited from
the general population in Baltimore, Maryland to watch a videotape of a pre-test cancer
genetic counseling session. The analogue clients were asked to imagine they were the
patients in the visit and to respond to several open-ended questions about what they would
tell their family members about what they learned from the session. A quantitative content
analysis of the data from the open-ended responses will be conducted to identify the
frequency of commonly stated words, phrases and concepts related to the respondents'
characterization of the content of their family communication. From data source one of this
study, we will obtain information on what women report they would share with their family
members and the words they report they would use. Data source two of this study will
involve in-depth qualitative interviews with 40 African American women who have tested
positive for a BRCA1/2 mutation. These interviews will seek to understand how test results
and information from the genetic counseling process were actually shared with family
members. These interviews will seek to not only further describe what information
individuals reported sharing with their family members but also how the process of
communication unfolded. From these two forms of data, this study will describe the family
communication process of hereditary cancer risk among African American women.

Inclusion Criteria


Understands and speaks English

African American


18 years or older

Has had genetic testing for BRCA1/2 mutations

Type of Study:


Study Design:


Principal Investigator

Barbara B Biesecker

Investigator Role:

Principal Investigator

Investigator Affiliation:

National Human Genome Research Institute (NHGRI)


United States: Federal Government

Study ID:




Start Date:

June 2011

Completion Date:

Related Keywords:

  • Ovarian Neoplasm
  • Cancer Genetics
  • Breast Cancer
  • BRCA1
  • BRCA2
  • Breast Cancer
  • African American
  • Women
  • Breast Neoplasms
  • Neoplasms
  • Ovarian Neoplasms



National Human Genome Research Institute (NHGRI), 9000 Rockville PikeBethesda, Maryland  20892