Family Communication of Hereditary Breast and Ovarian Cancer Risk Among African Americans

This study has been terminated.
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ) Identifier:
First received: June 15, 2011
Last updated: January 8, 2016
Last verified: January 2016


- Certain genetic mutations are linked to higher rates of cancer. It is important for people with these mutations to tell their families about it. This is because others in the family may also be at greater risk for developing these cancers. They can also pass these genes to their own children. But not much is known about how African Americans tell their family members about the results of their genetic testing. The information from this study can be used to improve genetic counseling services. These services will then be more effective in early cancer detection and prevention in the African American community.


- To learn more about how African Americans who have tested positive for BRCA1/2 mutations tell their families about their genetic risk.


- African American (or of African descent) women who recently received positive test results for BRCA1/2 mutations.


  • Participants will be screened with a basic medical history.
  • They will be asked general questions about their personal and family history. These include questions on marital and health insurance status, education, and income.
  • Those in the study will have a 45- to 60-minute phone interview. They will answer questions about how they told their family members about their genetic test results. They will also be asked what that experience was like.

Ovarian Neoplasm
Cancer Genetics
Breast Cancer

Study Type: Observational
Official Title: Family Communication of Hereditary Cancer Risk Among African Americans

Resource links provided by NLM:

Further study details as provided by National Institutes of Health Clinical Center (CC):

Estimated Enrollment: 40
Study Start Date: June 2011
Estimated Study Completion Date: January 2016
Detailed Description:
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.

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Female
Accepts Healthy Volunteers:   Yes

Understands and speaks English

African American


18 years or older

Has had genetic testing for BRCA1/2 mutations

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01374685

United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
National Human Genome Research Institute (NHGRI)
Principal Investigator: Barbara B Biesecker National Human Genome Research Institute (NHGRI)
  More Information

Responsible Party: National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ) Identifier: NCT01374685     History of Changes
Other Study ID Numbers: 999911186  11-HG-N186 
Study First Received: June 15, 2011
Last Updated: January 8, 2016
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Breast Cancer
African American

Additional relevant MeSH terms:
Hereditary Breast and Ovarian Cancer Syndrome
Ovarian Neoplasms
Adnexal Diseases
Breast Diseases
Breast Neoplasms
Endocrine Gland Neoplasms
Endocrine System Diseases
Genetic Diseases, Inborn
Genital Diseases, Female
Genital Neoplasms, Female
Gonadal Disorders
Neoplasms by Site
Neoplastic Syndromes, Hereditary
Ovarian Diseases
Skin Diseases
Urogenital Neoplasms processed this record on May 03, 2016