Interplay of Family Context and Ethnicity in BRCA1/2 Testing

Institution: University of California, Los Angeles
Investigator(s): Beth Glenn, Ph.D. -
Award Cycle: 2003 (Cycle IX) Grant #: 9FB-0093 Award: $79,945
Award Type: Postdoctoral Fellowship
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side



Initial Award Abstract (2003)
Genetic evaluation and susceptibility testing for breast cancer risk has been available for a number of years. Although more and more women participate in genetic evaluation each year, participation rates among minority women remain low. The reasons why minority women do not participate are unclear. Many women who have participated in genetic evaluation and testing have found the experience to be very valuable in guiding their own and their families medical decisions. Minority women will not benefit similarly if they do not participate in these services.

The decision to pursue genetic evaluation and testing is complex and been found to be influenced by a variety of factors including awareness of the availability of services, perceived risk of developing breast cancer, and the perceived benefits and costs of testing. Although these factors may be important at an individual level, the decision to pursue or not to pursue genetic evaluation and testing may not be an individual decision but instead may involve a woman’s entire family. A family's communication style, structure, and the anticipated impact of testing on the family, that is, the family context in which a woman considers genetic evaluation and testing may represent an important influence on her decision whether or not to pursue or genetic evaluation and testing. In addition, it is plausible family context differs by ethnicity and that these differences in family context may help explain the low level of minority participation in genetic evaluation and testing. Information collected in this study will help to answer the following questions: (1) What is family context? (2) Does family context influence interest in genetic evaluation and testing? (3) How strongly does family context affect interest in genetic evaluation and testing as compared to predictors investigated in previous studies? 4) Does the relationship between family context and interest in genetic evaluation and testing differ by ethnicity?

Therefore, the present project will study the notion of family context and how it influences decision-making regarding genetic evaluation and testing among sample of women at increased risk for hereditary breast cancer from five ethnic groups including Caucasian, African American, Hispanic, and two of the largest Asian subgroups in Los Angeles with the highest rates of breast cancer, Filipino and Japanese. During Phase 1, interviews will be conducted with 20 women (4 from each ethnic group) to gain a better understanding of the role of family context and how it relates to decision-making regarding genetic evaluation and testing for breast cancer risk. This information will be examined to determine the elements of family context most relevant to the decision-making process. An instrument to measure family context will then be developed based on the important elements of family context that emerged from Phase 1 interviews. During Phase 2, additional interviews will be conducted with 75 women (15 from each ethnic group) to administer the family context instrument and assess additional factors found to influence decision-making in previously conducted studies.

This study will be the first to specifically examine family context in relation to genetic evaluation and testing for breast cancer risk among an ethnically diverse sample of women at increased risk for breast cancer. The data obtained from this study will help researchers design interventions aimed at educating minority women about genetic evaluation and testing for breast cancer risk and increasing minority participation in genetic evaluation programs. In addition, the proposed project will provide Dr. Glenn with experience in conducting breast cancer research that will be critical as she develops her own program of research focused on breast cancer prevention and control in underserved populations.


Final Report (2006)
Although increasing numbers of women have participated in breast cancer genetic programs over time, participation rates among minority women remain low. The purpose of this exploratory research project was to gain an understanding of factors that may contribute to the low participation rates among minority women with a special focus on investigating the role of the family. In addition, this postdoctoral award provided an opportunity for Dr. Glenn to begin to develop her own independent program of research in breast cancer.

In-depth exploratory interviews were conducted with 37 women recruited through the community including 5 Caucasians, 3 Koreans, 6 Chinese, 2 Filipinos, 7 South Asians, 9 African Americans, and 5 Latinas. The majority of the sample was comprised of cancer survivors. The remainder of the sample had at least one first-degree relative with breast cancer, although many women had multiple cases of breast cancer in the family. The sample had a relatively high level of education (46% completed some graduate school). The majority of ethnic minority women who participated in this study had never heard of genetic testing for breast cancer risk. This is surprising given that most had a personal history of breast cancer or a close family member who had been diagnosed with the disease. Although many survivors and relatives are not eligible for testing, awareness of genetic services is likely necessary to ensure that eligible women can access services if desired. Previous research has shown that many physicians do not refer eligible women for genetic evaluation and that physician referrals are often prompted by patient inquires.

A number of psychosocial factors emerged as potential influences on a woman’s interest in testing including opinions about the options following testing, cultural factors, and family context issues. However, the relative importance of these factors in explaining ethnic differences in participation in genetic evaluation is unclear given the general lack of awareness about genetic testing services that we observed. Her results suggest that efforts should be intensified to inform ethnic minority women about genetic evaluation programs. Results of this study suggest that ethnic minority women lack awareness of the availability of genetic testing for breast cancer risk. Culturally-tailored interventions aimed at increasing awareness of genetic evaluation and testing may result in higher numbers of ethnic minority women participating in genetic evaluation programs.

Dr. Glenn is preparing a manuscript based on the results of this project. She is also interested in pursuing this line of research further. However, given the difficulty of recruiting ethnic minority women at hereditary risk for breast cancer from the community she is pursuing opportunities for collaboration with clinics or investigators that already have methods to reach this population.