Q+A: Genetic Testing and Medical Treatment

Thank you for your interest in Bill Weir's piece on the use of DNA tests to detect what medical conditions you may develop later in life.

Colleen McBride of the National Human Genome Research Institute offers the following answers to your questions.

A number of people expressed interest in getting the genetic susceptibility test shown in the news report. The test shown is only for research and is not available. In fact the test is still considered experimental because it has not been shown yet to have health benefits.

The woman who received her test results on air is participating in a research study to evaluate the test. The study has very specific criteria for who can take part, and we cannot accept volunteers.

However, if you are interested in being involved in genetic research studies, many universities and research institutions are looking for participants and would appreciate your help. You can also contact the National Society of Genetic Counselors for services in your region (www.nsgc.org/resourcelink.cfm).

It is possible to obtain similar types of genetic tests for common diseases directly through the Internet (which are generally priced between $100 and $1,000). It is important to know that there are few federal regulations controlling these tests, which means that the companies may make exaggerated claims about what the tests can do. Additionally, the tests may not be accurate.

A number of government committees and medical societies have investigated these genetic testing companies. Their reports have expressed a number of serious concerns about the validity of this type of genetic testing and discourage the purchase of genetic tests without the recommendation of a doctor.

Almost nothing is known about whether these types of tests have any health benefits. While genetic testing for common diseases may be useful in the future, the genetic evidence for these tests does not yet support their use except in research studies.

Here are more answers to some of your specific questions:

QUESTION: My daughter, age 31 has MS. Her husband, age 33, just got diagnosed with AS. They have two sons, ages 1 and 4. Would their sons benefit from DNA testing? Thank you for your reply -- Carmel Valdez, Colton, CA

ANSWER: The most appropriate way to address any concerns about the possibility for inherited disease would be to contact a clinical genetics team within their area. A genetics team can do a comprehensive review of medical and family histories. It is this type of detailed information that is needed to assess whether genetic testing would be beneficial to a family or not. A genetics team can help in assessing risks and discussing whether genetic testing is possible, while considering the pros and cons of such testing. -- Colleen McBride

QUESTION: If people get the testing, wouldn't this be a way for health or life insurers to decline covering a person based on a condition they might get in the future? Rose, Pennsylvania

ANSWER: This is a reasonable concern. Currently, there is national legislation in the works to make genetic discrimination illegal.

However, at this point it remains a possibility that has greatly hampered genetic research and advancement. In the context of this study, the test results are not entered into the participant's medical record and there are other protections in place to ensure confidentiality. -- -- Colleen McBride

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