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News RoomFOR IMMEDIATE RELEASE:October 28, 2004 CONTACTS:
Genetic Counseling: Myths and MisconceptionsAs advances in genetics increasingly capture the public’s attention, news stories and feature articles about the human implications of genetic testing abound. Although many accurately report the scientific facts, too often they perpetuate myths and misconceptions about the role of genetic counseling. I was recently confronted with a blatant example of these misconceptions. During a session designed to teach future physicians how to respond to families’ questions about inherited disorders, my student was trying to answer the question, “if a couple have a child affected with cystic fibrosis, what is the chance that their next child will be affected?” She, looked up warily and asked, “can’t you just tell them not to have any more children?” After sixteen years of clinical practice as a genetic counselor and co-director of the Medical Genetics Course of the University of North Carolina, Chapel Hill, it still stuns me to hear students voice these sentiments. The myth that genetic counseling tries to direct people’s reproductive behavior seems as prevalent today as when I began practicing. Ironically, the goals of genetic counseling are diametrically opposed to the traditional medical model in which physicians advise patients in a unidirectional, directive manner. Genetic counseling aims to communicate information to help families understand the nature of the disorder and how it is inherited, describe the available options that allow them to make decisions congruent with their values and beliefs, and provide support and resources to help them make the best possible adjustment to the impact of the disorder on their lives. These tenets underlie the educational and clinical training of genetic counselors and medical geneticists enabling them to become certified genetic service providers. They are so fundamental to clinical practice that they are enunciated in our Code of Ethics. My student’s misconceptions reflect a broader, social bias that perpetuates the stereotypes about genetic changes -- that these changes are rare and shameful, and that parents who produce affected children should feel guilty and refrain from having any more children.Singling out individuals who carry a genetic change, currently recognized as causing a disorder, is misguided. We all have genetic changes with potential to cause disease or disability either in our own or our children’s future. A more enlightened (and scientifically valid) view recognizes that we, as parents, have no control over which genetic changes we carry nor which ones we pass on to our children. Focusing on a single genetic change disregards the contribution of the rest of our genome in the creation of a unique and multifaceted individual. The words a health professional chooses to use, matter; they can help or hinder. Recent successes in deciphering the complex interplay of genetic and environmental causes of common diseases that we all face, demands effective communication practices to ensure that continued progress in scientific knowledge is coupled with improvements in the public’s health. Training health care professionals to communicate information about genetic disorders, accurately and humanely, and to culturally diverse families, deserves a prominent role in the curricula of health professional schools. As one family told me “knowledge is power; knowledge is frightening.” But scariest of all is not being able to decide what’s best for your child because you don’t know the options. Above all, that’s the lesson I hoped my student learned. For further information: Myra I. Roche, M.S., C.G.C.,
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