Citing what he called the dark side of the Human Genome Project, Boston University ethicist and legal scholar George Annas said a genetic privacy act needs to be passed by the federal government to protect individuals against genetic discrimination.
"We need to pass a privacy act to assure that individuals keep control over their genetic material," Dr. Annas, a professor of public health, said at a September 30 MIT lecture entitled "Cloning the Capitalism Gene: Genism, Patenting, and Privacy."
"We can see the potential for genism to be as vicious as racism and sexism," he said. He defined "genism" as discrimination against people because of their genetic composition.
Professor Annas said the Human Genome Project, when used to screen for diseases, will increase the number of abortions in the United States. He is concerned about extreme reactions to genetic information, citing a recent survey that showed 30 percent of Americans would abort a fetus with a "fat gene."
"Are we trying to get rid of diversity in the human genome and get the perfect human being with the perfect body type, athletic and strong?" he asked. He questioned whether society would use Human Genome Project results to arbitrate normality. "You need to look at the whole social climate when you are looking at people's genes. The underside of the Human Genome Project is that you could create a genetic underclass," he told the audience at the Arthur Miller Lecture on Science and Ethics sponsored by the Program in Science, Technology, and Society.
According to Professor Annas, most studies of genes so far have resulted in discrimination by insurance companies and health providers. In some cases, individuals have lost legal rights to their own DNA and to keep genetic information private.
Professor Annas also criticized US efforts under the 1991 Human Genome Diversity Project to collect DNA from vanishing indigenous peoples and patent cell lines. The idea behind the project was to trace migration patterns of various tribes and also trace the evolution of the human genome. He said these people should have been asked for their informed consent. "We should outlaw the patenting of human genes," said Professor Annas, adding he was worried that patenting body parts will devalue human life.
Another target for Professor Annas was recent remarks by President Clinton that supported the idea that science soon will allow every parent to have a genomic blueprint of their newborn child.
"This assumes children have no privacy regarding their DNA," he said. "Children have privacy rights, too, and parents should not screen kids before age 18 for things that cannot be treated." He also said screening for late-onset diseases like breast cancer should not be allowed, because it may lead to gender screening.
What's needed, he said, are rules for obtaining DNA samples and using information derived from those samples so that human life is not devalued. Federal rules are needed to assure that samples of DNA and tissues remain the property of the source unless the person specifically gives them away. He also said there should be rules to routinely destroy DNA and tissue samples unless the person who supplied them authorizes their storage for future use.
A version of this article appeared in MIT Tech Talk on October 9, 1996.
