FP Report -- July 1999
Special Section
Keeping current in the 'genetic age'
In the coming years, you'll increasingly talk to patients, genetic counselors, physician geneticists and others about genetic concepts, and you'll have to help your staff get up to speed, too. How can you best prepare yourself and your practice for the ramped-up role of human genetics and related ethical issues?
Take CME courses in modern genetics.
"What I'm doing now wasn't in my textbooks at medical school," said Nelson Wivel, M.D., deputy director of the Institute for Human Gene Therapy at the University of Pennsylvania in Philadelphia. "We all face that. You're really a student for life, or you get ignorant pretty fast."
Use the Internet.
It's a good source for information, both basic and technical. For the basics, try the Web site of the National Human Genome Research Institute (www.nhgri.nih.gov) -- it offers a glossary of genetic terms, videos and images, frequently asked questions and links to other genetic sites. For disease-specific information, go to the Web site of the foundation for that disease, such as the Cystic Fibrosis Foundation (www.cff.org). Trying to diagnose a puzzling condition? Go to a genetic chat room on a source such as Medline or MD Consult and ask questions, suggested family physician Mark Lavallee, M.D., of South Bend, Ind., who cares for many patients with genetic conditions. You may get leads pointing you in the right direction.Read printed publications.
"Get a book with pictures," says Lavallee. "When someone comes in with a screwy complaint that you've never seen before, flip through the book. You can only diagnose what you know."Establish a method for getting as much family history from your patients as possible.
The National Coalition for Health Professional Education in Genetics, of which AAFP is a member, is working on a family history tool to provide a commonly accepted diagramming method for all health professionals, said family physician Michael Scotti Jr., M.D., vice president for medical education at the AMA and a co-chair of the coalition.As part of her NIH translational oncology fellowship, family physician Louise Acheson, M.D., M.S., of Cleveland, Ohio, is working with her colleagues to develop an automated method of collecting family histories. "I'm hoping the patient could call a number and be interviewed, and the history could then be faxed to the family doctor's office," she explained. "It takes 15 to 30 minutes to develop a three-generation family tree, and many FPs don't have that time available in their patient visits."
Enlist patients in your quest for knowledge.
"Your average genetic patient, unless their mentation is affected, will teach you more than almost anything -- they desperately want as much information as possible because it's their body," said Lavallee. "They'll often do Internet searches for you, then share and discuss what they've found."See yourself as a member of the genetics team.
Initiate relationships with genetic counselors and medical geneticists. Ask genetic counselors for a list of what they do and any special interest areas. If you're rural, check nearby cities for counselors who might work by telephone or telemedicine or who travel periodically to rural areas.Establish a climate of "preventive ethics" in your practice.
Discuss ethical issues with patients before they arise. For example, clarifying the limits of patient-physician confidentiality can help later if a patient tests positive for a genetic condition, and you feel you must notify other relatives for their health's sake. Let patients know you could refer them to someone else if they asked you to do something you couldn't do for philosophical reasons.Have a "standard operating procedure" for when a patient asks about genetic testing. "If a patient has a strong family history for breast cancer and wants to be tested, discuss up front how genetic tests are about odds and probabilities and the ethical issues related to testing," said Martin Lipsky, M.D., co-author of the Medical Ethics monograph published last year by the AAFP Home Study Self-Assessment program and chair of the family medicine department at Northwestern University Medical School in Chicago. "It's often overlooked that testing negative sometimes has a negative consequence -- the psychological issue of survivor guilt. Make sure they don't suffer a consequence they didn't anticipate."
Remember the role of environment.
"There's a tendency in the press to speak as if one's genetic makeup almost completely determines what one's health will be," Acheson said. "That's not the way most genetic information will play out once we know more about the complexity of it. Most bits of genetic information will have an effect in parallel with the environment that the person lives in, what they eat and what they're exposed to."
FP Report is published by the AAFP News Department. Copyright © 1999 by American Academy of Family Physicians.
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