Lynch Syndrome testing results - how to keep out of medical record

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Lynch Syndrome testing results - how to keep out of medical record

by SAgirl on Tue Mar 17, 2009 12:00 AM

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I have relatives with Lynch Syndrome and have been told I should be tested.  I am willing to pay for the testing without insurance, which is what I want to do so that my insurance company will not have record of it.  However the one testing facility I contacted said the test results would go in my medical record.  Does anyone know of any facilities that will test you and keep the results completely private? 

RE: Lynch Syndrome testing results - how to keep out of medical record

by Karenb on Wed Apr 08, 2009 12:00 AM

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I would suggest having the test conducted through a genetic counselor and not directly through the laboratory. The genetic counselor should be able to ensure your privacy by paying for the test yourself.

Are you in the United States? If so your rights are protected under GINA. Genetic Information Nondiscrimination Act of 2008

http://www.genome.gov/10002328#3

Link to genetic counselors

http://www.ornl.gov/sci/techresources/Human_Genome/medicine/

 

RE: Lynch Syndrome testing results - how to keep out of medical record

by dezysmith on Wed Apr 30, 2014 07:47 PM

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My genetic counseler told me that too but she also said that when it comes to obtaining life insurance there can be problems.

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