Of mice and men. Scientists often study mice to understand human diseases. At Harvard Medical School, for example, they have discovered genetic variations in mice that protect against anthrax. Finding similar characteristics in humans could lead to better treatment of the disease. And that's lust one example. In the futuristic world of genetics in medicine, the implications of research on public health efforts to prevent disease, promote health and, ultimately, improve patient care may seem like a far-off reality. Not so. Genetics research is already having an impact on public health.
STARTING WITH NEWBORN SCREENING
Newborn screening is the most widely recognized use of genetic technologies by state health agencies. Well-established state programs screen newborns for a variety of genetic diseases, such as phenylketonuria (PKU) and sickle cell anemia--diseases, that, when discovered early, make a world of difference for affected children. Screenings recently reached a new milestone in Mississippi, where the state mandates screening for a record 40 disorders.
These programs, however, only begin to tap the potential of genetic testing. Down the road, state health departments may have the capability to offer even more extensive genetic services. And not just for babies. Testing for predisposition to common disorders like heart disease may one day encourage those at risk to adjust their lifestyle to prevent future illness. But the public has to believe in the value of such tests, and that's where education comes in.
Washington's Genetics Education Plan reaches out to a broad spectrum, including adoption workers, clergy, lawmakers, insurers and the general public. The plan targets health care professionals and physicians, too, who may lack the necessary tools to put genetic information in an appropriate context from a medical, ethical, legal and social standpoint. Doctors who do not specialize in genetics may not be able to explain accurately the increased likelihood of illness-if any-based on a genetic test result or be aware of the potential risk of discrimination by employers or insurers.
Although the Washington State Department of Health is the mastermind behind the project, legislators like Senator Rosa Franklin are dedicated to the issue of genetics and public health. As a former nurse, Franklin has long understood the importance of the Human Genome Project's findings to the American public and has worked to get other legislators involved. But it has been an uphill battle.
"The learning curve for legislators and the public is great ... but people need to know what genetic testing means and what the options are," she says. "That's why education is so important." Today people regard genetic technologies with both wonder and fear. Understanding the capabilities and confines of technology and the laws that restrict its misuse may help to alleviate these concerns.
Back at the state health department, innovative programs, such as community "front porch" forums, will be coming to neighborhoods in Washington this year. Debra Lochner Doyle, state coordinator for genetic services at the health department, explains, "We provide the pizza. The citizens supply the porch." The goal of these gatherings is to get the public talking about genetics. Following the get-togethers, the health department plans to reach out to the greater community through a series of newspaper articles about "front porch" discussions. Ultimately, Doyle hopes that these discussions will provide a baseline of understanding about genetics within the general public and will allow for more targeted health education and health promotion efforts.
Oregon policymakers also have a stake in genetics education. During the 2001 session, the legislature passed a bill charging the Advisory Committee on Genetic Privacy and Research with educating the public about …