IMAGN! Increasing Minority Awareness of Genetics Now!

Abstract

The Human Genome Project revealed that any two humans are 99.9 percent genetically identical to each other. Yet by looking around you, it’s apparent that the 0.1 percent by which we all differ in our DNA can lead to significant differences in physical appearance. That our outward appearance can vary so dramatically has scientists wondering if our insides vary that much as well.

Scientists believe that biology and genetics do play a significant role in disease susceptibility. The current research effort at the National Human Genome Research Institute called the HapMap Project aims to identify and study the 0.1 percent difference in the human genome with the goal of trying to figure out who is more likely to develop what disease. To do this, researchers are comparing the differences in genomes between people of three major continental groups: Asian, African, and European.

This intersection of genetics and race has a long and volatile history. From the American eugenics movement in the early 20th century, to the Holocaust, to the more recent Sickle Cell Control Act of the 1970s, studying the genetics of different populations often has led to discrimination. This new age of genetic medicine holds promise to predict, treat, and cure human disease better than ever before, but will we be able to avoid its misinterpretation and potential misuses?

Increasing dialogue between scientists and community leaders may help avoid repeating history, while making the most of what genetic technologies have to offer. With funding from the National Institutes of Health and the U.S. Department of Energy, the Genetics and Public Policy Center, funded by The Pew Charitable Trusts at Johns Hopkins University, and the Congressional Black Caucus co-sponsored a conference to foster this type of dialogue. The one-day conference, entitled IMAGN! – Increasing Minority Awareness of Genetics Now! – brought together 150 political, community, business, religious and opinion leaders, mostly from the African American community, and scientists and policy leaders to discuss the impact of the new genetics on the black community. Participants were charged with addressing the following two questions: How can advances in human genetics be harnessed to improve the health and well-being of African Americans? And how can we protect against inequitable and unjust uses of genetic information?