Genetics
Hi- this is June Peters in the Clinical Genetics Branch of the National Cancer Institute (AKA NCI). I work in the NCI Division of Cancer Epidemiology and Genetics. This is a group of NIH scientists responsible for learning more about the various causes of cancer. In my job as a genetic counselor, I help people understand how new and amazing genetic laboratory discoveries may impact on their lives.
My work with families with hereditary cancers includes a variety of tasks involving health communications. For example, we help people to:
- Collect and evaluate potential risk factors to determine their personal risk of developing cancer;
- Weigh the pros and cons of having genetic testing; and
- To use this genetic information to make decisions about optimal healthcare.
For those with genetic alterations (or what we call "mutations"), there are now studies to compare new methods of screening and prevention with what is currently available. On the other hand, those WITHOUT the family mutation may experience relief and peace of mind, since being mutation-negative means they are NOT at increased genetic risk. Either way, families benefit from accurate and timely health communications from trained and experienced cancer genetics professionals.
If a patient or family member is concerned that they may have a hereditary predisposition toward developing a disease like cancer, they can collect an accurate family history at the Surgeon General's Family History website, and then bring this pedigree to the attention of their healthcare provider. If there is an indication that cancer may be unusually common in the family, the NCI Cancer Genetics Professional web-based search engine can link patients and family members to trained cancer genetics professionals in their own communities who can provide an accurate risk assessment, genetic education, counseling, and even testing if indicated.
We in cancer genetic counseling look to research supported by the Health Communication and Informatics Research Branch at NCI to inform our practice. For example, families and I often work together to formulate a plan for talking frankly with their other relatives about the hereditary cancer in the family. This is where the research of Dr. Mary Daly's group at Fox Chase Cancer Center is helpful. Hers was one of the first groups to pioneer the use of family genograms in those with hereditary cancers. We look forward to the results of her current NCI-funded randomized controlled trial on "communicating genetic test results to the family". We hope that insights from this study will provide us with additional health communication strategies for approaching relatives who otherwise might not know to watch out for cancer in themselves and their children.
In related research, Dr. Marc Schwartz, at the Lombardi Cancer Center, is helping us understand how to identify and address adolescents' issues about cancer in their families. Another of his studies funded by the Health Communication and Informatics Research Portfolio has the potential for providing the public with greater access to cancer genetics services through telephone based genetic counseling.
As you have heard, the NCI Division of Cancer Epidemiology and Genetics and the Division of Cancer Control and Population Sciences work together to ensure that all of NCI's cancer genetic counseling recommendations and management guidelines are evidence-based.
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