By Sean Henahan, Access Excellence

Learn more about the current state of scientific knowledge regarding genetically inherited diseases at the Science Magazine/National Center for Biotechnology Information site, Gene Map of the Human Genome

SAN FRANCISCO (Oct. 31, 1996) As geneticists zero in on the workings of the human genome and gene therapy enters clinical testing, the public continues to regard the field with a combination of fear and mistrust, according to the president of the American Society of Human Genetics. "Progress has been enormous, and we have every reason to be proud of what we have been able to accomplish in such a remarkably short time. And yet, we, the genetic researchers and practitioners find ourselves in a disquieting situation. We are accused of engaging in too much `hype' about we what we think we know and are likely to be able to do, and we have been greeted by a considerable amount of equally if not more egregious hype from the opposing side," said Charles Epstein, MD, UCSF professor of pediatrics during his presidential address at the society's 46th annual meeting. "Not everyone trusts our motives or intentions, and at the same time that the public is in awe of what we have already done, it fears what it thinks we might be able to do," Epstein said. Epstein heads the Division of Medical Genetics at UCSF and founded the Medical Genetics Clinic at UCSF in 1967.

Societal fear and mistrust take many forms, he emphasized. It has surfaced in legislative hearings and in the university classroom, where genetic testing has been described as "racist, sexist, insensitive and/or just plain misguided," he said. It has also led to criticism of gene therapy, which was described in an NIH committee report last year as being hyped by an overzealous research community that has raised hopes of cures "just around the corner," Epstein added.

Public concern has also prompted efforts by the FDA and Congress to impose overly restrictive government regulations on DNA research. These include proposed Congressional limits on use of genetic samples, which, if approved, would have "spelled serious trouble for genetic research," Epstein said, adding:

"What troubles me is that there is or is starting to be a breakdown in our ability to engage in rational discourse about what genetics research is all about. For reasons that have nothing to do with genetics itself, although they are certainly grounded in the history of the applications and misapplications of genetics, there is a movement to proscribe certain areas of genetic research -- because the findings or, perhaps more accurately, the potential applications of the findings, are believed to be so frightening because of the possibilities for abuse."

Contrary to public perception, geneticists are concerned about the social implications of their work, he stressed:.

"But in reacting to these concerns -- our own concerns -- we are in danger of trying ourselves in knots and embracing policies and regulations that will only serve to impede the progress of human genetics without necessarily protecting or enhancing the public good."

Epstein called on geneticists to be strong advocates for their profession while not promising too much, not promoting unfounded fears and working for regulations that balance personal rights with research and clinical interests.

"While advocating our own position, the human genetics community must be ever mindful that we do not function in isolation and have responsibilities that transcend the purely professional," Epstein said. "We must continue to be and, if anything, become more involved in the social and ethical discussion that increasingly surrounds everything that we do. We need to be cognizant of the fact that we constitute just one element in the societal debate about the human applications of genetic knowledge and that the important decisions will certainly not be ours alone to make."