Vive La Difference
Walk down a crowded street in just about any major U.S. city (and many others around the world) and you will encounter people who speak a panoply of languages and whose skin colors span a broad range of tones. Depending on where you live and work, you might enjoy the same rich mosaic in your neighborhood, office, and schools. We celebrate such diversity, because it opens people’s minds to different cultures and works to break down barriers of distrust and ignorance that too often divide people of varying backgrounds.
But contemporary society’s embrace of diversity comes with an element of caution and even discomfort. Especially with issues that touch upon race, we seem reluctant to probe too closely-in both the social and scientific spheres. The revolution in genomics, however, which is describing our DNA in exacting detail, is almost forcing scientists to confront differences between the world’s population groups. And not being afraid to ask potentially controversial questions about our differences is what makes this issue’s article “Genes, Medicine, and the New Race Debate” so compelling.
Written by TR executive editor David Rotman, it’s the story of a $100 million effort called the International HapMap Project. A natural extension of the Human Genome Project, which produced a master copy of the human DNA sequence, the HapMap Project aims to identify common variations in people’s DNA that seem to act as signposts for such debilitating diseases as diabetes, hypertension, and schizophrenia. If successful, the project will make it possible to assess an individual’s risk factors for these diseases as well as identify the drugs that will likely work for him or her.
But here’s the catch. In order for the HapMap to be truly relevant to people everywhere, it will have to spell out in great detail the genetic variations between people from different regions of the world. And bioethicists, sociologists, and other scientists are rightfully concerned that this genetic information could, as our story states, “be manipulated to give an air of biological credence to ethnic stereotypes, to revive discredited racial classifications, and to fuel bogus claims of fundamental genetic differences between groups.”
The HapMap researchers are walking a tightrope. The project will almost inevitably find some genetic differences between population groups: this is part of the diversity we celebrate. It’s valuable, even vital, to explore these differences, so long as we do so without reverting to old racial or ethnic stereotypes.
The HapMap effort is showing encouraging sensitivity on this point. Before even embarking on this quest, organizers formed the Population and Ethical, Legal, and Social Implications Group. Consisting of 19 well-known social scientists and genomics researchers, the group worked hard to ensure the project was conducted in an open fashion, with donors fully understanding the issues behind it (HapMap information will be publicly available on the Web).”From the very beginning, there’s been a lot of concern that this be done in as good a way as is possible,” says Ellen Wright Clayton, director of Vanderbilt University’s Genetics and Health Policy Center and cochair of the ethics group. Now, she says, as the project expands, the group is being reconfigured to become even more international and reflective of the people it touches.
The HapMap project is of immense potential benefit to people of all backgrounds. So long as investigators go forward as responsibly as they have begun, society has nothing to fear from what it reveals.
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