Genomics: Towards a Healthier You

NHGRI social and behavioral researcher Barbara Biesecker talks about the importance of family history in predicting disease risk for single gene disorders and complex genetic disorders. The singer and performer T-Boz shares her personal story about living with sickle cell anemia as one example of genetic health issues. Ms. Biesecker highlights the use of genetic testing and reasons whether or not to be tested. The career of a genetic counselor is highlighted. For more information and video presentation with slides please go to: www.genome.gov

Meet Lisa and Sherrl: Genetic Counseling

Lisa Owens was stunned when her cousin was diagnosed with stage 4 breast cancer, but the situation took a more personal turn when genetic testing revealed that she and her mother, Sherrl Wenzel, carried the gene that increased their risk of contracting ovarian or breast cancer from less than one to 94 percent. In this Children’s Channel video podcast, Lisa and Sherrl share the story of how a visit to the Center for Genetics and Metabolism changed, and possibly saved, their lives.
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What life is like for those married to genetic counseling students.

Huntington’s Disease Movie

This is another project I did. Yeah, I know it sucks, but It was the best I could do in 2 hours…….also I wasn’t filming. The intro picture was created by me Music recreated by me
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Recent news about a possible over the counter genetic test has raised questions about genetic testing and the validity of tests you can purchase online. University of Minnesota genetics researcher Kristin Niendorf discusses the tests and what you should know about them.

Ask The Experts About Genetic Counselors

John asks…

is offering genetic testing directly to consumers ethical?

A number of companies offer genetic testing directly to consumers, bypassing the involvement of physicians and genetic counselors.I think this is a good idea , but I need medical, ethical, legal, or social dimensions of this issue to support my point

admin answers:

NO!

These companies are using simple technology and giving people results that they may not understand. Here are the main reasons this is a bad idea:

1. There are variable detection rates on these types of tests, and people should understand the limitations of them. There are false positives, false negatives, variants of unknown significance, and misleading results. There needs to be a healthcare professional there to explain this to people- it can be very confusing!

2. Many of the tests are over-simplified. They are only looking for 1 particular point mutation or SNP (single nucleotide polymorphism) associated with a disease, when in reality there may be MANY more (and many that are highly dependent on your ethnic background). It’s like only looking at 1 piece of a puzzle.

3. When results come back, they may cause problems for the patient. For example, a false sense of security (i.e. Not undergoing cancer screening such as mammograms), or may create high levels of anxiety (“Does this mean I will get {insert disease here}??”)

While it is wonderful to have the opportunity to learn more about our genetic makeup, including predispositions to preventable diseases, tests like this are over-simplified and irresponsible to offer to people without proper explanation. These companies are making money by leaving people hanging with inaccurate or unnecessary information. Doctors and genetic counselors can explain the limitations and interpretations of such tests, to give patients the MOST ACCURATE results possible.

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The Importance of Family History for Breast Cancer

Please visit: www.mdanderson.org for more information regarding prevention and screening. Diana Turco, a Certified Genetic Counselor at MD Anderson’s Clinical Cancer Genetics discusses whether or not genetic testing is right for you. Approximately 5-10% of cancer is inherited. Individuals who have a genetic predisposition for developing cancer will have a far higher chance of developing cancer within their lifetime and at an earlier age. Learn more about genetic testing and counseling. View other videos at www.mdanderson.org/videos
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