• Join Our Newsletter
  • A
  • A
  • A
  • Patient Empowerment Network
    • Facebook
    • Twitter
    • Pinterest
    • LinkedIn
    • Instagram
    • Youtube
    • Help By Cancer Diagnosis
      • Acute Myeloid Leukemia (AML)
      • Breast Cancer
      • Chronic Lymphocytic Leukemia (CLL)
      • Gynecological Cancers
      • Head & Neck Cancer
      • Lung Cancer
      • Melanoma
      • Multiple Myeloma
      • Myeloproliferative Neoplasms (MPNs)
      • Non-Hodgkin Lymphoma (NHL)
      • Prostate Cancer
      • Renal Medullary Carcinoma (RMC)
      • Thyroid Cancer
      • General Cancer Information
    • Events
    • Blog
    • About Us
    • Contact
    • Get Involved
      • Volunteer as a Network Manager
      • The Value of PEN
      • Fundraise for PEN
      • Corporate Sponsorships
      • Wills and Bequests
      • Ways to Donate
      • Join the Board
    • Donate
    • Search
    • Menu Menu

    At Home Genetic Tests Offer Limited Information

    October 1, 2019/in General Blog T, General Health Info, General Testing /by PEN Editorial Staff

    This blog was originally published by Caner Today by Sharon Tregaskis here.

    At-home genetic tests offer limited information on cancer risk.

    KNOWLEDGE IS POWER ​wit​h regards to lowering cancer risk. But if you’re looking for clues to the hereditary hazards lurking in your genome, testing at home can be risky business.

    Dozens of companies sell online genetic tests to consumers interested in exploring their ancestry or health risks. No prescription is needed. The consumer simply needs to send in a saliva sample. The U.S. Food and Drug Administration (FDA) cautions consumers that the results they receive from these direct-to-consumer tests are not intended to be the primary basis for medical decision-making. But consumers may not be aware of how limited the test findings actually are.

    Questions to Ask

    Find out the following before you purchase an at-home genetic test.

    Who will have access to your data?
    Learn whether the testing company can sell your data to a third party. Can you opt out of having your data sold?

    Will your privacy be protected?
    Know the company’s policies. Consider using a pseudonym and a false date of birth to reduce your risk of exposure.

    What if there’s bad news?
    Identify a genetic counselor you can talk to about cancer risk test results. The National Society of Genetic Counselors can help you find one in your area.​

    In January 2019, the company 23andMe became the first permitted by the FDA t​o offer an at-home genetic test to assess colorectal cancer risk. The test looks for two genetic mutations associated with a rare, hereditary colorectal cancer syndrome. It does not screen for Lynch syndrome, the inherited condition responsible for most cases of hereditary colorectal cancer. (Lynch syndrome also increases risk for other types of cancer.)

    The FDA previously approved the company’s test for three inherited BRCA mutations associated with an increased risk for breast and ovarian cancer. However, the BRCA genetic variations the test looks for are not the most common. A study presented in April 2019 at the American College of Medical Genetics and Genomics annual meeting found the 23andMe test missed close to 90% of BRCA mutation carriers. The study was conducted by Invitae, a company that sells genetic tests for inherited cancers that can only be ordered by a physician.

    “Many of these [direct-to-consumer tests] are in no way equivalent to a medical-grade test,” says genetic counselor Lisa Madlensky, director of the Family Cancer Genetics Program at Moores Cancer Center at UC San Diego Health in California.

    Kayla Sheets, a genetic counselor and chair of the Massachusetts Board of Registration of Genetic Counselors, took a direct-to-consumer genetic test so she could experience the process firsthand. She found that the online resources for interpreting her results fell far short of the tailored, comprehensive information genetic counselors like her offer. “There are different levels of DNA testing available,” says Sheets. “Anyone concerned about cancer risk needs something ordered by a genetic counselor who has a really good understanding of what that test can and can’t do for them.” ​​

    June 21, 2019
    Tags: At home testing, General Blog T
    Share this entry
    • Share on Facebook
    • Share on Twitter
    • Share on WhatsApp
    • Share on Pinterest
    • Share on LinkedIn
    • Share on Tumblr
    • Share on Reddit
    • Share by Mail
    https://powerfulpatients.org/pen/wp-content/uploads/6-2.png 600 600 PEN Editorial Staff https://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.png PEN Editorial Staff2019-10-01 07:50:522019-10-01 07:50:52At Home Genetic Tests Offer Limited Information
    You might also like
    5 Things Never to Tell Someone Fighting Cancer
    Does Pre-Cancer Mean I’m Going to Get Cancer?
    Finding Support in Unlikely Places

    Recent Posts

    • Patient Profile: Alexis Chase, PhDJanuary 15, 2021 - 12:38 pm
    • #patientchat Highlights: The Engaged Patient: Utilizing Digital HealthJanuary 15, 2021 - 10:42 am
    • Bright Hope on the Horizon – Part FourJanuary 14, 2021 - 9:05 am
    • MPN Patient and Caregiver Explain How Colors Impact Their LivesJanuary 13, 2021 - 12:23 pm
    • Myeloma Treatment Decisions: Insist on Essential TestingJanuary 13, 2021 - 10:06 am
    Patient Empowerment Network

    CONNECT WITH US

    SUBSCRIBE TO OUR NEWSLETTER

     

    © 2020 Patient Empowerment Network, a 501(c)(3) Public Charity
    Inclusion Policy | Privacy Policy
    Scroll to top