Researcher Urges Protections Against Genetic Discrimination

A pioneer in the quest to complete the human genetic map warned Congress this week that the possibility of genetic discrimination threatens to stall advances in biotechnology.

J. Craig Venter, co-founder of Rockville, Md.-based Celera Genomics Corp., said that as science unravels each individual’s genetic blueprint, insurance companies and employers could use the DNA information to deny health coverage or jobs to people who are genetically predisposed to certain diseases.

“It’s natural that an insurance company would be wary of insuring someone who has a propensity to getting cancer at an early age or who likely will be afflicted with Alzheimer’s,” he told the Joint Economic Committee of the House and Senate.

Scientists also fear that genetic discrimination could creep into other areas of life. For example, banks could refuse to give loans to people susceptible to debilitating diseases, believing they would not be able to repay the money.

Venter, who expects individual genetic maps to be available in the next 10 to 20 years, said that without legislation prohibiting discrimination, people might be afraid to avail themselves of these advances in health care.

“These maps will save lives and make our lives healthier and better, but most people aren’t going to risk their jobs and insurance for them,” he said.

Venter, whose company is expected this month to report that it has completed a draft of the human genetic code, said the issue of confidentiality would be key to the future of biotechnology.

“Without the assurance that this knowledge will not be used against people, a field that will revolutionize medicine could slow to crawl,” he said.

DNA, or deoxyribonucleic acid, comprises the genetic material passed on from generation to generation that forms the building blocks of nearly every living creature.

Scientists estimate that every human has at least 100,000 genes, each a vital bit of information that can explain everything from which diseases each person may be at risk of developing, such as cancer or Alzheimer’s disease, to height or hair and eye color.

The Clinton administration earlier this year banned federal agencies from using genetic testing to deny jobs or promotions to their workers. In addition, the House and Senate are considering legislation that would provide some protection against genetic discrimination.

Sen. Connie Mack, R-Fla., chairman of the Joint Economic Committee, said during the hearing that he anticipates congressional passage of genetic discrimination legislation this year.

“I firmly believe that biotechnology will be to the 21st century what computers were to the second half of the 20th century, and we need to ensure America is at the forefront of this revolution,” he said.

Once more is understood about genes, the hope is to use that information to improve treatments or find cures for diseases.

However, many employers continue to seek genetic information about their workers. A 1999 survey by the American Management Association, a New York City-based business association, found that 30 percent of large and midsize companies obtain such information on employees. Seven percent use it in hiring and promotions.