Ethics of the Human Genome Project and Related Research:
Who Benefits?
Laura F. Weeks
I. The Human Genome Project: An Overview
A new mother holds her tiny infant for the first time and anxiously takes
inventory: two arms, two legs, two hands, two feet, ten fingers, ten toes, forty-six
chromosomes, thirty thousand genes, and 3.2 billion base pairs (1). This modern mother
is a beneficiary of the Human Genome Project, an international effort launched in 1990
with the goal of sequencing the entire human genome by 2005. On April 14, 2003, the
International Human Genome Sequencing Consortium came forward with a press release
stating that the project had been completed with 99.99% accuracy two years before the
date anticipated, appropriately coinciding with the fiftieth anniversary of James Watson
and Francis Crick’s discovery of DNA’s double-helix structure (3). Researchers
worldwide were given a road map of human life through public access over the internet
and began to race towards destinations.
Along with the positive aspects of the Human Genome Project’s completion came
the fears of what could be done with this new information, such as human cloning and
eugenically motivated experimentation. To help ease tensions and prevent fear from
becoming immediate reality, three percent of the Human Genome Project’s annual budget
was spent on studying the ethical, legal, and social issues associated with perhaps the
greatest biological research undertaking in history (3). Also helping to ease fears over
such subjects was the promise of a brighter medical tomorrow through studying genetic
diseases, susceptibilities, and pharmacogenomics, or the development of genome specific
medications. This brings about perhaps the most challenging ethical issue surrounding the
Human Genome Project: what research should be funded, and who should benefit?
One situation this dilemma leads to is that of the haves versus the have-nots. In
this scenario, the focus and direction of genetic research involving the newly mapped
genome would be dr