Dr. Malvern has worked tirelessly with members of the National Educational Foundation Board and members of Zeta Phi Beta

Sorority, Inc. to bring information from the Human Genome Project to minorities. In fact, she says “no other minority organization

has gone to the lengths that the National Educational Foundation has to provide national and local awareness conferences and

presentations on genetics to minority communities.”  Since 1997, the NEF has presented six national genomics conferences in

collaboration with national leaders from the Department of Energy; National Human Genome Research Institute, National

Institutes of Health; the March of Dimes; Kaiser Permanente and the Consumer Health Foundation; National Human Genome

Center at Howard University, College of Medicine; and Shiloh Baptist Church of Washington, D.C. 

 

The NEF is a non-profit organization and is the scholarship arm of Zeta Phi Beta Sorority, Inc., an organization of over

100,000 university women worldwide.  Grant writing is an important part of Dr. Malvern’s job description. “Our community

is now beginning to ask a lot of questions about genetics and the research currently taking place,” says Dr. Malvern,

“and through small grant funding we have been able to help Zeta members sponsor some 50 smaller local conferences

for its members and the minority communities they serve. It’s through these grassroots efforts that genetic information

and issues are taken deeper into the community.” 

 

The Zeta Phi Beta Sorority National Educational Foundation not only takes information to the community but

asks the community to help draft public comment and policy recommendations concerning the genetics issues that most concern

African American and other minority communities. “In the Fall of 2001,” notes Dr. Malvern, “we published a series of 16

recommendations from more than 1500 people of color who attended these conferences.  These recommendations address

a wide breadth of concerns including: developing national policy to protect the privacy of personal genetic information,

ensuring minorities and the underserved have access to genetic technology and culturally sensitive genetic counseling, as

well as advocacy for a Research Subjects Bill of Rights.” The recommendations and concerns were presented to the

Pennsylvania Legislative Black Caucus as one way of bringing these issues to national attention.

 

In 2002 the NEF and the Mid Atlantic Cancer Genetics Network collaborated to bring cancer genetics information to minority

 communities (see related article, p. 7). The NEF is furthering its genetics education and research collaborations with

Harvard University Medical School, Brigham and Women’s Hospital, and the University of Pennsylvania.  Finally, the

NEF plans to provide for more mini-grants throughout the country via Zeta chapters. There are plans to expand its venue

by providing genetics information and awareness programs to rural areas of the country.  And, the Foundation is in the

planning stages of providing Human Genome  Project research information and relevant concerns to ministers and the

religious community. As Dr. Malvern says, “Churches are the grassroots of our communities; ministers provide much

leadership in our communities. When ministers become educated advocates for this healthcare program, the populace

becomes educated advocates and benefactors of this healthcare program.”.