CHICAGODisparities in cancer incidence and mortality between
whites and ethnic minorities in the United States persist,
suggesting a need for targeted efforts to increase cancer screening
and prevention measures among ethnic minorities and the medically underserved.
Such efforts include increasing minority participation in cancer
prevention trials (see ONI September 2000, page 3) and implementing
new technologies for cancer screening and early detection, some of
which have only recently become available to the public.
One such technology is genetic screening for mutations in cancer
susceptibility genes. Such screening accompanied by genetic
counseling enables individuals to assess their risk of developing
cancer and decide which type of cancer screening and cancer
prevention measures to take.
Unfortunately, genetic screening may not be accessible to all,
especially to ethnic minorities and the medically under-served, who
may lack essential knowledge about cancer screening or who may be
unfamiliar with genetic testing.
In addition, minority communities may have significant concerns about
being used as guinea pigs for new medical tests and procedures. These
concerns may lead to underutilization of genetic screening for cancer risk.
This paper will address the work of Chanita Hughes, PhD, of
Georgetown University Medical Center, on ethnic differences in
knowledge and attitudes about genetic testing for breast cancer risk,
as presented at the Robert H. Lurie Comprehensive Cancer Centers
Symposium on Cancer: Reaching Medically Under-served Populations.
Approximately 5% of women diagnosed with breast cancer each year
carry a mutation in the BRCA1 gene. Women with a BRCA1 mutation
have a nearly eightfold higher (80% to 85%) lifetime risk of
developing breast cancer and up to 30-fold higher lifetime risk of
developing ovarian cancer (approximately 44%), compared with women in
the general population (about 11% and 1.5% to 2%, respectively).
Genetic testing to detect mutations in BRCA1 and assess cancer risk
is becoming available to an increasing number of women. To provide
information and alleviate patient distress about genetic testing,
pre- and post-test counseling and patient education are crucial.
According to Dr. Chanita Hughes, the goals of pretest education and
counseling include providing education about genes, inheritance,
susceptibility, and risk assessment. In addition, counseling sessions
should address the benefits and risks of testing, including
confidentiality issues, effects on family members, and the potential
for insurance discrimination.
In pretest counseling sessions, Dr. Hughes goal is not to
encourage or discourage testing but rather to provide information so
that women can make an informed decision about whether to pursue
Goals of post-test counseling include discussing disclosure, risks of
developing cancer, and recommendations for screening and
surveillance. Supportive counseling is also available.
In a series of studies on cultural influences on genetic testing, Dr.
Caryn Lerman, Dr. Hughes, and their colleagues show that black and
white women have different views and levels of knowledge about
genetic testing, and respond differently to education and counseling
interventions prior to undergoing genetic testing for BRCA1
In one study, Hughes et al found that white women reported more
exposure to written and verbal materials about genetic testing than
did black women. A greater percentage of white women had used genetic
testing, and they had significantly greater knowledge levels about
breast cancer genetics and genetic testing.
In a second study, participants were randomized to receive either a
genetic testing education intervention alone or an education
intervention accompanied by counseling about genetic testing.
Education efforts focused on identifying individual risk factors and
patterns of inheritance, and addressed the benefits, limitations, and
risks of genetic testing.
Counseling topics included womens experiences with cancer in
their families, the anticipated impact of positive/negative results
or of declining testing, and coping resources and skills.
In this study, black and white women in both intervention arms were
found to have similar attitudes about the benefits of genetic
testing, although black women tended to rate the benefits of testing
significantly higher than did white women. However, black and white
women in both intervention arms had very different views on the
negative aspects of genetic testing. Black women were considerably
more concerned about the effects of testing on their family members
and reported more emotional strain.[4,5]
When the counseling and education intervention arm was compared with
the education intervention arm, the researchers found that counseling
increased the number of concerns and decreased the number of benefits
that participants identified.
For black women, education and counseling led to a greater increase
in intention to undergo genetic testing, compared with education
alone, while for white women there was no difference in the impact of
the two intervention arms.
Because differences between the black and white women persisted after
controlling for sociodemographic factors, the observed differences
may be ascribed to cultural beliefs and values.
For example, women from diverse ethnic and cultural backgrounds may
have different attitudes toward temporal orientation (eg, emphasizing
the present rather than the future); cancer fatalism; religion and
spirituality; and family relationships.
Reported differences between black and white women in knowledge
levels and attitudes about genetic testing raise the concern that
education and counseling efforts for women at increased risk for
cancer are not reaching black women.
In addition, counseling and education efforts about the benefits,
limitations, and risks of genetic testing may not address the
specific concerns of black women regarding genetic testing, such as
their distrust of the medical community and concerns about the
effects of testing on family members.[4,5]
Targeted genetic counseling programs addressing the specific cultural
beliefs and concerns of participants may successfully increase
knowledge about and awareness of genetic testing.
1. American Cancer Society: Cancer Facts and Figures 2000. Atlanta,
American Cancer Society, 2000.
2. Miki Y, Swensen J, Shattuck-Eidens D, et al: A strong candidate
for the breast and ovarian cancer susceptibility gene BRCA1. Science
3. Ford D, Easton DF, Bishop DT, et al: Risks of cancer in
BRCA1-mutation carriers: Breast Cancer Linkage Consortium. Lancet
4. Hughes C, Gomez-Caminero A, Benkendorf J, et al: Ethnic
differences in knowledge and attitudes about BRCA1 testing in women
at increased risk. Patient Educ Couns 32:51-62, 1997.
5. Lerman C, Hughes C, Benkendorf J, et al: Racial differences in
testing motivation and psychological distress following pretest
education for BRCA1 gene testing. Cancer Epidemiol Biomarkers Prev