Genetic Counseling Newsletter June 2011

Claire Harwood
Intern, Cancer Genetics Risk Assessment Program

Sorting out the confusion in an age of genetic information: How genetic counselors can help

As more is known about the role of genetics in health care, information on genetic testing is becoming available through an increasing number of sources. There are thousands of websites on the internet with information on genetic testing, including some that offer athome genetic testing kits. While genetic counselors are the ideal resource for this testing, various other health practitioners may offer this service. Unfortunately, some of these individuals may not have adequate training in genetics. With so many different resources for genetic information, how do you know which are accurate, and more importantly, how the results will impact your lifestyle and medical management? Talking to a licensed genetic counselor is one way to ensure that you are receiving the most up-to-date and accurate genetic testing possible.

Who is a genetic counselor?

Genetic counselors are healthcare professionals trained in medical genetics and counseling. They offer resources and support to those who have family members with a genetic disorder. They also can provide risk assessment for patients who have a family history of an illness, such as cancer. Genetic counselors can be specialized in different areas of medicine including prenatal, pediatric, cancer and cardiovascular genetics. Board-certified genetic counselors have completed a two year Master’s degree program and have passed the exam given by the American Board of Genetic Counselors. Most genetic counselors work as a part of a health care team in a hospital, university medical center, or in a physician’s private practice. They have the necessary training and knowledge to provide unbiased information so that patients can make the decision that best suits their lifestyle. Some states in the U.S. have a law in place that requires a license for practicing genetic counseling, which is the case for Indiana as of July 2010. Requiring that genetic counselors have a license protects the public from unqualified practitioners, and allows legal action against those who violate the license. The license offers the additional benefit of holding genetic counselors accountable for the quality of care they provide. In order to maintain a licensed status, genetic counselors must continue their education so that they are updated on new developments in genetic technology and research. To view a list of Genetic Counselors licensed in Indiana, visit: https://mylicense.in.gov/everification/SearchResults.aspx.

How can a genetic counselor help?

Genetic counselors can help bridge the gap between genetic testing facilities and the patient, while protecting the privacy of the individual. For patients to have the most accurate understanding of their personal risk, it is helpful to have a genetic counselor explain the significance of test results and discuss further options. Additionally, genetic counselors are required to stay current on the newest genetic tests available, which is important to realize since genetic testing options and technology change rapidly with new advances and better detection rates. Determining which genetic test would provide the best information for the patient requires significant background knowledge of genetics and a thorough risk assessment of the patient. An untrained individual could easily order the incorrect test, resulting in additional costs without providing helpful information. A genetic counselor can save the patient money by ordering the most appropriate test available and reducing the likelihood of needing further testing. Practitioners who are not trained to counsel patients on genetic risks and disorders may not provide comprehensive information in the manner that is best for the patient. Some unqualified sources of genetic testing may only provide the test itself, not the necessary information to understand what the results really mean. Genetic test results are not that helpful if one does not know how to use them, and genetic counselors can help patients make the most of this information. Discussing further testing and screening options are important to make sure the patient receives the maximum benefit from undergoing a genetic test. Additionally, in some cases, a test yields inconclusive results. For these situations, the expertise of a genetic counselor is especially crucial since these results can otherwise often be misinterpreted. Without the input of a genetic counselor during the testing process, you may be missing some important information when managing your health.

For more information or to find a certified/ licensed genetic counselor in your area, visit www.nsgc.org.