The National Educational Foundation (NEF) feels strongly that “all minority communities should be informed

about our country’s exploration into genomic research”. The NEF is the 501©3 scholarship arm of the Zeta Phi

Beta Sorority, Inc. The Sorority promotes scholarship and community service and has a membership of over

100,000 well educated women in the U.S., Africa, and Korea. Sorority members have been instrumental in

educating their local communities about ways to promote health and prevent diseases like diabetes, heart

disease and cancer.

The mission of the Mid Atlantic Cancer Genetic Network (MACGN) is to help communities, families and doctors

 learn more about genes and cancer. Because the Sorority has been a leader in disseminating information

about the Human Genome Project, collaboration was a natural fit. So, in late 2002, on a cold but sunny winter

morning we all met at Issie Jenkins’ house to explore the possibilities. Mrs. Jenkins, a lawyer, is the immediate

past NEF chairperson. Dr Kathryn Malvern is the current chairperson.  We drafted and approved a Collaborative

Agreement, formulated a proposal, and obtained Human Subjects approval from the Johns Hopkins Institutional

Review Board.

Our goal was to pilot an educational and recruitment study. MACGN personnel would present an educational

seminar on cancer and genetics to members of the Zeta Phi Beta Sorority, Inc. during annual leadership

conferences in each of four states, Maryland, Pennsylvania, New Jersey and Delaware. MACGN also provided

a small educational grant to help support conference activities. Since March 2003, we have reached almost

1300 African American women of all ages.

Our educational mission has been to increase awareness of the problem of breast cancer in African American

women. Based on recent statistics, only 73% of African American women survive breast cancer compared with

88% of white women. Younger African American women (less than age 45) experience an even poorer overall

survival rate, 65.9%. In a paper published in the Journal of the National Cancer Institute, Dr Fume Olopade and

her colleagues drew comparisons between what we know about breast cancer in young African American women

and what we know about breast cancer due to the inheritance of a mutated BRCA1 gene. Commonalities included:

early age of onset and rapidly dividing and poorly differentiated tumors. The researchers concluded that “These

facts suggest that BRCA1 mutations may contribute to breast cancer in a significant proportion of African

American women, but limited data are available from this population to evaluate this possibility”. Clearly much

more research regarding breast cancer in African American women is needed. It is the hope of MACGN and

the National Educational Foundation that together we can spread the word about this problem in an effort to

encourage more women of color to join research programs like MACGN so we can learn more about this

problem and how to effectively prevent it.