With human genetics, it seems, a little knowledge can be a dangerous thing. As the science of genetic diagnosis matures, researchers are learning how to spot dozens of hereditary weaknesses and diseases by simply testing a cheek scraping or a sample of blood. But treating or preventing most of those genetic conditions is still largely the stuff of speculation, and will likely remain so for years. Therein lies an ethical problem, as described by Dorothy Nelkin in her book Dangerous Diagnostics (The Scientist, Nov. 27, 1989, page 13): Once a person is labeled as genetically flawed, what is to stop the insurance companies, employers, and governments of the world from discriminating against him or her?
As the massive Human Genome Project gets under way, questions of just that sort have prompted the National Institutes of Health to create a new program focusing on the ethical issues that surround the national effort to map and sequence the human DNA molecule. Funding for the new program is expected to account for at least 3% of NIH's share of the estimated $3 billion the federal government will spend on the Human Genome Project over the next 15 years. This year the program expects to spend $1 million to $2 million on ethics studies. In fiscal 1991 NIH has asked for $130 million for its genome program; if Congress grants that request, the ethics research component could increase to nearly $4 million. The Department of Energy, which has so far supported nearly a third of the project, is also planning to sponsor an ethics research program.
Last month an NIH advisory panel released a draft of a proposed five-year plan for the genome project. The report recommends ethics research in several areas. Key subjects include: "fairness in the use of genetic information" with respect to insurance, employment, and adoption; the psychological impact of knowing one's own genetic makeup; and the quality of genetic counseling in such areas as prenatal testing, testing for disorders like cystic fibrosis, and testing when there is no remedy available, such as for Huntington's disease.
"We have very little experience in this area, and we need a point of reference" says Bettie Graham, acting manager for the NIH ethics program. Although many of the questions have been addressed in the context of AIDS, "we need to put the genetic angle on it," she says. The program intends to fund research, fellowships, and conferences.
In the next several months the program will review the first batch of grant proposals. So far, says Graham, most of the applicants want funds to organize conferences or to analyze previous research and debates on such issues as eugenics. The NIH advisory committee is planning additional meetings to refine the research agenda, including possible "town meetings" to solicit comment from the general public.
"The use of genetic information, for good or ill, has long been an issue in our society," the advisory committee's report points out. "But the quantity and complexity of genetic information which should become available requires that special precautions be taken."
For more information, contact Bettie Graham, National Center for Human Genome Research, Building 38A, Room 613, National Institutes of Health, Bethesda, Md. 20892; (301) 496-7531.