ABSTRACT
In the last week of May 2003 the National Human Genome Center (NHGC) to of the DNA
of individuals of African descent. The New York Times called it ‘the nation’s
largest repository of DNA from African-Americans’, and explained that its
creation was motivated by a history of racial discrimination in the United
States that found expression in disparities of health care. ‘We want to make
sure’, noted the dean of the medical school, Floyd J. Malveaux, that ‘as
genetics move forward, as information is collected, as data is being mined,
that we are part of that process’.1 With biotechnology widely hailed as the
harbinger of a medical revolution, researchers at Howard wanted to ensure
that the black population in the United States would have full access to the
most up-to-date health care. They viewed the databank, which was projected
to house, in five years, DNA samples from 25,000 African-descended
individuals, collected mainly from patients at hospitals and clinics asso-
ciated with Howard’s medical school, as crucial to that inclusion. No one
involved in the decision was unaware of the risks of such a databank, but its
proponents believed that the nation’s history of anti-black discrimination
and glaring disparities in health care made the countervailing danger of
African-American exclusion from the benefits of genomic research more
urgent. Arthur L. Holden, president of the First Genetic Trust, a Chicago
company chosen to help create the databank, insisted that the only
controversial decision would be the refusal to pursue the collection of data.2