The University Record, September 25, 2000

Knowledge of human genome leads to more questions

By Rebecca A. Doyle

Most people don’t seem to know very much about the Human Genome Project, says Francis Collins, and there is a lot of confusion about the project and its implications, and about genetic research in general.

Collins, director of the National Human Genome Research Institute, based his statement on a poll by Time magazine and his own “non-scientific survey of people who sit next to me on airplanes.” Both indicated that while a majority would like to benefit from genetic applications in medicine, many think that the information might be used to hurt people more than to help them.

Addressing public health professionals at a symposium leading into a two-day national conference on genetics and public health, Collins told the audience that public health practitioners and educators will play a big part in helping channel the knowledge that sequencing the human genome will bring forward.

“I believe that genetic research has the possibility of alleviating human suffering, that it will allow us to help people lead normal, healthier lives,” Collins said. “I also believe that it could run off the track.” Public health professionals and educators will be able to help channel the information that comes from the completed sequencing of the human genome, he said, by working in the new fields that will be created in medicine and public health and because they work directly with people.

“The ultimate goal will be to determine therapeutic methods, which will be possible for almost every disease for which we can identify the genetic ‘misspelling,’” Collins said. Within the next five to seven years, it will be possible to use genetic research tools to uncover major genetic susceptibility factors for most common illnesses.

Cures for diseases will most likely be accomplished by designing a drug to target the particular genetic irregularity.

In a current clinical trial involving 34 patients with advanced chronic myelogenous leukemia, a targeted designer drug was administered. All of the patients in the study are currently in remission, Collins said.

Despite many exciting advances in treatment of disease, Collins said there are areas in which genetic knowledge could be harmful and should be regulated.

Graphic courtesy of the U.S. Department of Energy Human Genome Program
Looking ahead 10 years, he said that any testing for genetic abnormalities should require permission from those tested, whether the testing is to be done for the purpose of devising medical treatment, disease prevention or other purposes.

Scientists, lawmakers, educators and the general public are “afraid people will go out and do crazy things because they can,” Collins said. “There are things we should not do. We should not clone humans. It is unsafe, and it has profound moral and ethical considerations.

“We ought to set limits. We need to prevent discrimination in the availability of health insurance.” He expressed hope that Congress would retain its bipartisan enthusiasm and proceed in protecting individual rights and privacy in that area.

“How will we move genetic testing from research into clinical practice? Genetic testing ought to be scrutinized,” he said, noting that in addition to obtaining permission, the questions of privacy and ownership need to be answered.

Finally, Collins asked, “Can health care providers and the public become genetic-literate in time? There is a lot of confusion out there.”

To help educate the public about the human genome and the project to identify genetic predisposition to certain traits and diseases, the project has developed a video that Collins said will be released on CD and will be available free to high school biology teachers within the next two or three months. The video will explain in general what the Human Genome Project is about and what has been learned from the work so far.

“I hope this reaches out to you and inspires you,” Collins said after he had shown the video production to the audience. “Public health has a particularly important role to play in this.”

Collins’ remarks were part of a public pre-conference symposium sponsored by the School of Public Health that also honored the contribution of John Maassab. Maassab, professor of epidemiology in the School, developed a cold-adapted influenza virus that can be administered by a nasal spray instead of injection. The virus has been licensed to Aviron and is marketed as FluMistŪ.