August 3, 1998
The Johns Hopkins School of Public Health, in collaboration with the Hopkins Oncology Center, has received a five-year, $3.8 million grant from the National Cancer Institute (NCI) to establish an innovative cancer genetics network in the Mid-Atlantic region.
Hopkins is one of less than a dozen institutions nationwide charged with establishing a national resource for genetic research, genetic testing and patient education. The network's infrastructure is designed to investigate the genetic basis of cancer susceptibility and integrate the new findings into patient care. The network also will address the ethical and legal issues associated with inherited cancer risk.
NCI is calling these networks the largest virtual collaborative effort dedicated to the study of cancer genetics. "These cancer genetics networks will create a multidisciplinary and interdisciplinary collaborative structure that will enable the participating institutions to draw upon each other and to have access to research resources, information, and expertise beyond the scope of any single institution," says NCI Director Richard Klausner, M.D.
The Hopkins-based network already includes dozens of hospitals and physicians in the region with plans to attract many more. Additionally, people with strong family histories of cancer may voluntarily enroll to participate in future educational and clinical studies. "Our initial goal is to establish a confidential registry of people with strong family histories of cancer," says Gloria Petersen, Ph.D., associate professor of epidemiology and oncology and network principal investigator. "Our long-term goal is to use what we learn to improve therapies, and ideally, to develop cancer prevention strategies for the general population," she says.
Hopkins was awarded the grant in part due to its nationally recognized programs in cancer genetics research and its Cancer Risk Assessment Program, which provides genetic counseling, testing, and screening recommendations for individuals with a family history of inherited cancer syndromes. Petersen says initial projects will focus on breast, ovarian and colon cancers, malignancies for which there is a known genetic predisposition. However, future studies of other familial cancers also are planned. Such research projects will be enhanced by the establishment of the network which will accelerate the researchers' ability to access large numbers of potential study participants, she said.
The network will include both research and educational components. An internet web site where the public can gain information about cancer genetic susceptibility and register as potential candidates for network studies will be developed. Network approved physicians and researchers will be able to use the secured and confidential databases as a resource for their own cancer genetics studies.
"The amount of genetic information that has been uncovered in recent years is vast. However, much of this new knowledge has not been integrated or has been improperly integrated into medical practice. In far too many cases, the genetic cancer risk assessments being presented to patients are inaccurate or misunderstood," says Petersen. The education of physicians, researchers, and other health care providers will be achieved through a professional curriculum in cancer genetics susceptibility, including academic courses, written materials and an electronic newsletter.
The team also will explore the behavioral, epidemiological and ethical ramifications of genetic cancer susceptibility. "We want to learn how people interpret and use the information given to them during genetic counseling and evaluate how closely they adhere to screening recommendations. We also want to find out more about how personal considerations, such as insurance and job discrimination, interfere with use of available genetic tests and information. And, finally, we want to obtain a definitive epidemiological base to determine how many people at risk of cancer actually go on to develop the disease and why," says Constance Griffin, M.D., associate professor of pathology and oncology as well as the Cancer Genetics Network co-principal investigator.
Other investigators on this project include: Kathy Helzlsouer, M.D., M.H.S., Johns Hopkins; Barbara Bernhardt, M.S., Johns Hopkins; Maimon Cohen, M.D., Greater Baltimore Medical Center, Center for Human Genetics; Gail Geller, Sc.D., Johns Hopkins; Neil Holtzman, M.D., Johns Hopkins; Peter Li, Ph.D., Johns Hopkins; and Sharon Olsen, M.S., R.N., Johns Hopkins. For more information on the Mid-Atlantic Cancer Genetics Network, call (410) 614-0378. The Johns Hopkins Cancer Risk Assessment Program can be reached at (410) 955-8964.