Ethics and the Genome Map

July 30, 1991

Technological advance always comes at a price. Mary Knudson's July 21 Sunday Sun story on gene mapping shows that the scientific value of charting the human genome carries a potentially debilitating price: loss of job mobility for people found "at risk" of genetic diseases; loss of insurability for families carrying certain gene combinations; even discrimination against people deemed likely to develop unfavorable psychological traits.

It shouldn't be that way. Scientists pursuing the 15-year, multi-nation Human Genome Project expect to read the genetic code written in the 100,000 or so genes making up the 23 pairs of chromosomes in each human cell. The project will let researchers identify the switches that control everything from hair color, size, weight and musculature to susceptibility to disease. At last, they may find the genetic roots of personality. Their plan is to reach an ability to make genetic snapshots showing the potential and risks inherent in particular individuals' hereditary makeup.

Sound too much like Aldous Huxley's "Brave New World," with individuals tracked by genetic code to specific stations in life, forever barred from the manifold opportunities inherent in a free society? Such a result could come to pass if the genome project stopped at laying out the road map, highlighting the hazards presented by particular genes. Insurers and employers, chary of the financial risks possible if an employee or family member developed expensive-to-treat ailments, might be tempted to "red line" human beings.

There is more to the genome project than looking for risks. James Watson, co-discoverer of DNA and director of the mapping project, has promised to use 3 percent of the project's $3-billion budget to chart as well the ethical and social effects of this new knowledge. And a panel of project researchers has asked the Equal Employment Opportunity Commission for new regulations to prevent employment discrimination based on genetic heritage.

The real promise of genome mapping, slower to develop than the road map, is the possibility of new medical treatments, targeted at genetic susceptibility to disease rather than at disease organisms. Misuse of genetic information could derail the support for reaching this new plateau, on which scientists might eventually discover ways to repair birth defects, correct hereditary disorders and control autoimmune diseases.

Turning a landmark scientific advance to uses which frustrate people's legitimate expectations of bettering their lives would be a perversion of Congress' aims in funding the project and the ethos on which American democracy is based. That would be a price too high to pay. It should not be allowed.

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