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At a time when research advances are expanding knowledge of the genetic contributors to disease, genetic counseling can help patients make informed decisions about complex test results.
"Genetic counseling brings genome science to the patient level," said Robin Bennett, genetic counselor, manager of the UW Medical Center Genetic Medicine Clinic, and president of the National Society of Genetic Counselors.
Genetic counselors are health professionals with specialized graduate degrees and experience in medical genetics and in talking with patients about their options. They work as members of a health care team by providing information and support to families who have members with birth defects or genetic disorders or who may be at personal risk for inherited conditions.
UW Medical Center started one of the country's first programs to offer presymptomatic testing and genetic counseling for individuals with family histories of Huntington's Disease, cancer, Alzheimer's, heart disease, and other common genetic disorders.
This type of genetic counseling provides an informed, early assessment of risk that can help patients make important decisions about their lives. By interpreting data on the risk of an inherited birth defect or disease, counselors can help couples decide whether to have children. Counseling can lead to better preventive care, as well as earlier and more frequent screening the onset of a disease. Timeliness is especially important for diseases, such as breast cancer or prostate cancer, where an early diagnosis can substantially improve the likelihood of successful treatment.
That being said, most people overestimate their individual risks when it comes to issues surrounding genetics, according to Bennett. She points to the widely held belief that serious genetic disorders are much more common among the offspring of first cousins. In reality, their increased risk of birth defects is relatively small.
Bennett was the lead author of a report on this subject published by an National Society of Genetic Counselors task force that included genetic counselors, physicians and epidemiologists. The task force reviewed data from six major studies from 1965 to 2000 and concluded that the risk of birth defects, including mental retardation and genetic disorders, was around 6 percent for children of first cousin unions. That is only 1.7percent to 2.8 percent higher than for the general population of couples. In other words, the odds are about 94 percent that the child will be healthy.
Misconceptions about the actual risks for children of cousins have sometimes led to terminations of these pregnancies. Other couples suffer needless anxiety. Bennett sites an instance where a woman was sterilized on the advice of her doctor because her parents were cousins.
According to Bennett, a genetic counselor's most important role is to help clients understand and adjust to complex information, and to reach decisions that are right for them.
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