American College of Medical Genetics News
Statement on Direct-To-Consumer Genetic Testing
BETHESDA, Md., Sept. 27 PRNewswire — More genetic tests are available than ever before, ranging from home DNA test kits, tests that can help determine a person's predisposition to certain diseases, and even home paternity tests. Along with greater availability of genetic tests and increased Direct-to-Consumer (DTC) advertising, however, come increased risks to the public. The American College of Medical Genetics (ACMG) advises consumers to involve a genetics expert in the process of genetic testing. "We applaud efforts to educate the public about the availability of genetic testing resources to help identify and manage those at increased risk for serious diseases, but it is absolutely critical that the public realize that genetic testing is only part of the process. Genetic testing should be accompanied by appropriate genetic counseling, both in the consideration of whether to initiate testing and in the interpretation of test results. Trained genetic professionals, including M.D. and PhD geneticists and certified genetic counselors, should be sought out to perform this important role," says Joe Leigh Simpson, MD, FACMG, president of ACMG.
"Genetic testing is a technical, highly complex specialty. A genetics expert such as a medical geneticist or certified genetic counselor can help people to sort through all of the issues including family history factors and what test results may mean. Genetics experts can also help consumers wade through the numerous tests available, some of which are of dubious validity or have not met standards of clinical utility," says Michael Watson, PhD, FACMG, Executive Director of the American College of Medical Genetics.
To help the public find qualified genetic experts in their area, ACMG has developed a free online tool, Find A Geneticist, available at www.acmg.net/
Direct-to-Consumer advertising about genetic tests has the potential to raise unwarranted fears in consumers and can lead to unnecessary testing. Further, there are a number of risks and potential for harm if a genetics professional is not involved in the genetic testing, including inappropriate test utilization, misinterpretations, tests that are inaccurate or not clinically valid, incomplete clinical information, lack of follow-up care, misinformation and other adverse consequences. A consultation with a trained professional can help the consumer determine what information may be available from the test and its potential usefulness. "Genetic tests often provide a predictive risk ... and predictive risk involves more than just a genetic test," said Watson.
In conclusion, "It is critical that individuals ask for a referral to a genetic expert who can help in determining what tests might be advisable and in interpreting results," says Bruce Korf, MD, PhD, president-elect of ACMG.
The American College of Medical Genetics first published a Policy Statement titled " ACMG Statement on Direct-to-Consumer Genetic Testing" in 2004 which is available at: http://www.acmg.net/StaticContent/StaticPages/Direct_Consumer.pdf/
About the American College of Medical Genetics
Founded in 1991, the American College of Medical Genetics (www.acmg.net) advances the practice of medical genetics by providing education, resources and a voice for more than 1400 biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics. ACMG's activities include the development of laboratory and practice standards and guidelines, advocating for quality genetic services in health care and in public health, and promoting the development of methods to diagnose, treat and prevent genetic disease. Genetics in Medicine, published monthly, is the official ACMG peer- reviewed journal. ACMG's website (www.acmg.net) offers a variety of resources including Policy Statements, Practice Guidelines, Educational Tools, and a Medical Geneticist Locator. The educational and public health programs of the American College of Medical Genetics are dependent upon charitable gifts from corporations, foundations, and individuals. The American College of Medical Genetics Foundation is a 501(c)(3) not-for-profit organization dedicated to funding the College's diverse efforts to translate genes into health.
SOURCE American College of Medical Genetics
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