Thursday, August 16, 2001 • Vol 7, Issue 16
Tangle of genome-project issues prompts conference
Northwest network sets gathering Friday, Sept. 14, in Pelton Auditorium
By BARBARA BERG
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PHOTO BY CLAY EALS
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| Ksenia Peters (center) and Karma Kreizenbeck show the draft of a brochure for the Sept. 14 genetics conference to Sophie Breeskin, project lead for the network, who works in the Collaborative Data Services shared resource. |
The Hutch and the University of Washington will host a genetics- education conference next month to help public-health professionals, health educators and others navigate the tangle of ethical, legal and social issues spawned by the Human Genome Project.
Called "Cancer Genetics and the Human Genome: Implications for Society and Medicine," the symposium is open to the public and features talks by scientists in industry and academia, including several Hutch investigators, a lawyer and a genetic counselor. It will be held Friday, Sept. 14, in Pelton Auditorium.
The conference is sponsored by the Northwest Cancer Genetics Network (one of eight regional genetics centers established by the National Cancer Institute), the UW Institute for Public Health Genetics and the UW School of Pharmacy. Dr. John Potter, head of the Cancer Prevention Research Program, serves as principal investigator for the Seattle site.
Besides furthering research on genetic and environmental cancer risk factors, the network aims to provide public genetics education, particularly for professionals whose jobs require an understanding of genetics-related issues, said Karma Kreizenbeck, network project manager.
"Many people have heard that there is a first draft of the human genome sequence but don't really understand what that means," she said. "Someone whose work requires some genetics knowledge - such as an employee of the state Department of Health - would benefit from attending."
Topics to be covered include:
- An overview of the Human Genome Project.
- Characterizing genes in families and populations.
- Gene patenting and ownership.
- Uses and implications of genetic testing.
- Genetic research translated into medical practice.
The Northwest network, established in 1998, is a collaborative effort of the Hutch and UW. Dr. Robert Day, president and director, emeritus serves as co-principal investigator.
The nationwide network supports a broad range of basic, clinical and public health studies, including molecular, genetic, epidemiological and biostatistical research, with the ultimate goal of developing new strategies to prevent disease.
A major component of the network is to develop a national registry of individuals who may be called on to participate in cancer-genetics studies.
The Seattle-area site already has recruited 2,300 individuals for the registry, Kreizenbeck said.
"We are the biggest site in the network, and we're also one of two population-based sites," she said.
"Other regional sites are doing most of their recruiting from targeted populations at high risk for certain diseases."
Individuals with a family history of cancer as well as those with no known predisposition are eligible to participate in the network.
Genetic counselor joins NW network
The Northwest Cancer Genetics Network has brought on board a genetic counselor to develop a variety of genetics education efforts.
Ksenia Peters Koon joined the network staff in March.
"This is a non-traditional job for a genetic counselor," said Koon, who has a master's degree in genetic counseling.
"You typically think of a genetic counselor as someone who offers a clinical service and helps individuals evaluate and interpret the consequences of genetic testing. A big component of my job with the network will be to provide public education about the implications of genetic testing and research."
One of Koon's first projects will be to offer education sessions for local participants in a new ovarian-cancer early-detection screening trial offered at the Hutch and 15 other institutions around the country.
"Many people out there have heard about genetic testing but are vague on the details," she said. "The ovarian-cancer study won't have a genetic-testing component, but some of the participants may have questions or concerns about it, since we'll be working with a group at high risk for developing ovarian cancer."
Over time, Koon expects to offer similar education sessions for participants in other screening and prevention studies. She is also a member of the national Cancer Genetics Network Education Working Group, which oversees efforts at public genetics education.
Prior to joining the Hutch, Koon worked as a genetic counselor in a breast-cancer genetics study led by Dr. Mary-Claire King at the University of Washington.
