Patients and physicians need a genetics primer
Patients and physicians need a genetics primer
Opinions drive public reaction to genetic mapping
One consensus among medical ethicists and scientists regarding genetic mapping and testing is that John Q. Public and his physician will both have to become gene-savvy to benefit from the knowledge scientists are gaining.
In preparation for mapping the entire human deoxyribonucleic acid (DNA) and two years ahead of schedule, the federal government is working to educate consumers and health care providers about the ramifications of having the human genome mapped.
The National Institutes of Health (NIH) in Bethesda, MD, for instance, recently took the unprecedented step of offering an all-day class to anyone interested the nuts-and-bolts of genetics. Some participants even were allowed inside NIH laboratories to watch DNA sequencing.
The program answered questions the average person might have about genetics, including:
• How does my genetic heritage influence my risk of disease?
• Are illnesses like heart disease and diabetes triggered mostly by genes, or do genes interact with diet, smoking, and other factors?
• If my family is prone to a certain disease, should I take a gene test? If I have a "bad gene," can I do anything to protect my health? Can I keep the test results private and away from my insurer and employer?
• How soon are genetic discoveries going to change the way my primary care physician, cardiologist, or other doctor diagnoses and treats me?
The geneticists’ goal is for consumers to understand basic genetic principles enough to ask their own physicians questions about their health and to critically assess media reports of the latest discoveries, says Craig Higgins, chief of outreach and education at NIH’s National Human Genome Research Institute. The institute oversees the Human Genome Project, the comprehensive effort to catalog all the human genes. "Consider it a primer in genetics," he says. "Virtually every disease has a genetic component. The better people understand genetics and its impact in medicine, the better the interaction between the health care provider and the patient is going to be."
The educational efforts aren’t stopping there. The U.S. Department of Health and Human Services (HHS) is seeking input from the public about how to best use the information obtained from genetic tests. The HHS Secretary’s advisory committee on genetic testing was established to help achieve that goal.
The panel of geneticists is preparing a report on recommendations for how to ensure quality genetic testing is conducted and physicians and consumers use the tests appropriately. First, the committee wants to see how much Americans understand about genetic testing and what information and oversight is needed. One way the committee will seek input is through a public meeting. The meeting will be held Jan. 27, 2000, at the University of Maryland in Baltimore.
"We want to try to get as close to the grass roots as possible," says Edward McCabe, MD, professor and executive chair of pediatrics at the University of Califor nia at Los Angeles. McCabe also serves as chair of the advisory committee. "We may learn that people are concerned about an area we completely missed."
One of the panel’s priorities is determining how to explain to consumers the risks and benefits of genetic tests, notes McCabe. For those who can’t attend the meeting in person, the advisory committee developed a Web site. A transcript of the committee’s meetings are available for public inspection. In addition, consumers can see what recommendations are under discussion and e-mail comments to the committee. The Web address is www.nih.gov/od/orda/sacgtdocs.
(Editor’s note: To register for the NIH’s free gene class, go to http://www.nhgri.nih.gov/conf/. Public demand for the first class was high, and the agency will consider additional genetics tutorials next year.
Consumers who want to learn on their own can find easy-to-understand genetics primers at: www.nhgri. nih.gov/Policy_and_public_affairs/Communications/ Publications or www.accessexcellence.org/ae/AE/ AEPC/NIH.)
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.