Seminar Explores Ethical Implications of Genome Research

The successful sequencing of the human genome has opened extraordinary possibilities for medical advances, while offering humans the promise of healthier, longer lives. But the cutting edge research that has followed the mapping of the human genome has raised ethical questions over issues of genetic discrimination, privacy issues, the potential for enhancement of desirable human traits, and how and whether to grant equal access to the benefits of the research.

In a public seminar that the AAAS Program of Dialogue on Science, Ethics and Religion (DoSER)organized on 7 March to discuss these issues, Francis Collins, Director of the National Human Genome Research Institute at the National Institutes of Health, and Cynthia Cohen, of the Kennedy Institute of Ethics at Georgetown University, identified the concerns expressed in public debates and suggested that a discussion of ethics has always been and should continue to be inextricably linked to the process of genetic research.

From the outset, the Human Genome Project included a component devoted to the ethical, legal and social implications of sequencing human DNA. "A cohort of ethicists, theologians and engineers have made their careers studying the implications resulting from the Human Genome Project," Collins said, noting that the potential misuse of genetic information is no longer restricted to the realm of science fiction.

The public has taken a keen interest in what the human genome map does and doesn't say about humanity, reflecting a fascination with the power to seemingly alter natural selection, perhaps to interfere with the process of human evolution. There should be a certain level of humility in how humans view the results of the research, however. "One thing the Human Genome Project has proven is that there are no perfect human specimens," Collins said. "Everyone has DNA glitches."

Among his greatest concerns is the notion that the information he and his colleagues generate might be used to arbitrarily discriminate against people whose genetic heritage puts them at risk for future health problems. The potential for discrimination in obtaining and retaining health insurance and jobs must be swiftly addressed by federal legislators," Collins said. "It is discouraging that people are encouraged [by physicians] to use an alias because of fear of discrimination."

He noted, however, that the risk of discrimination must be weighed against the obvious health benefits derived from identifying the genetic factors that influence health. Individuals with a history for disease with a genetic component, such as genetic colon cancer, can now be tested for that specific gene. Diagnostics and preventive medicine increase the likelihood of early detection and survival.

Collins said that he also worries that the benefits of genetic research will be available to only a privileged few, when access to health care in the United States is already limited. And the distinction between the "haves and have-nots" of society could become greater, said Cohen, if individuals begin to use genetic engineering to weed out negative traits in their offspring, and to enhance traits that are desirable.

"The argument is that we already tinker with human evolution by saving children through medical procedures, repairing eyesight with corrective lenses, selecting marriage partners," Cohen said. "The question is, who determines which enhancements are morally acceptable and which are wrong?"

--Monica Amarelo