ILLINOIS DEPARTMENT OF PUBLIC HEALTH

Pat Quinn, Governor

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Direct-to-Consumer Testing

(DTC Testing)

Frequently Asked Questions (FAQs)

While DTC genetic testing may increase access to medical testing services for some individuals, consumers should talk with a healthcare provider and/or a genetics professional prior to testing to determine which, if any, testing is appropriate.

Questions to Ask Before Testing

  1. What kind of lab performs the testing?
    The lab should be CLIA (Clinical Laboratory Improvement Amendments) certified to ensure that it meets quality and current practice standards.
  2. Is genetic counseling included in the cost of the test? Or are consumer referrals to health care professionals with expertise in genetics available, either on staff or independent?
    Genetic counseling is recommended before testing to help determine which, if any, testing is appropriate for an individual. It also is recommended after testing to help interpret the results, as some genetic results can be extremely complex.
  3. Will the results be useful?And will the results be given in a manner that is understandable with a clear explanation of clinical implications, if any?
    Some DTC testing will provide information on which an individual can act, such as determining carrier status for a recessive disorder or lead to a change in diet and/or lifestyle. Other results may yield information for which nothing can be done or changed. Without guidance from a medical professional, such as a physician or genetic counselor, consumers may make important decisions regarding treatment or prevention based on inaccurate or misunderstood information. It is recommended that individuals meet with a genetic counselor before and after testing, as well as share their results with their physician.
  4. Is information disclosed to potential consumers regarding test purpose, potential limitations, validity and accuracy in a language that is understandable to the consumer? And what safeguards are in place to protect consumer/patient privacy?
    Read the company’s “Terms of Service” page/disclaimer on the website and ensure test results will remain confidential with appropriate safeguards for privacy.

Frequently Asked Questions

  1. How will consumers know which test to choose?
    Individuals should read the test information on the company’s website carefully and contact the company by phone or email with any questions. Some of the testing companies have genetic counselors on staff that can be of assistance, in addition to customer service representatives. It also may be helpful to read the company’s “Terms of service” page on their website.
  2. Who will help interpret the results?
    Some testing companies offer genetic counseling services to help interpret results. Individuals also may want to contact a local genetic counselor (www.nsgc.org) or their physician.
  3. If the testing is so much cheaper, why wouldn’t someone choose one of the DTC companies?
    Though the price is definitely an advantage, the DTC genetic testing market is still unregulated, uncertain and undefined. Main concerns include the accuracy of test results, lack of counseling pre- and post-test and the possible misinterpretation of complex results.

For more information, please contact Illinois Department of Public Health, Genetics Program, 535 W. Jefferson, 2nd Floor Springfield, IL 62761, 217-785-8101, TTY (hearing impaired use only) 800-547-0466

535 West Jefferson Street Springfield, Illinois 62761 · Phone 217-782-4977 · Fax 217-782-3987 · TTY 800-547-0466
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