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Should I Use Home Genetic Testing for Cancer Risk?

Should I Use Home Genetic Testing for Cancer Risk?
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Published on September 2, 2020

At-Home Genetic Testing for Breast Cancer and Prostate Cancer

The genie is out of the bottle. If you have the desire, you can find out, with a variety of at-home tests whether you are at risk for certain cancers. But should you?

What Is Involved in Getting Tested at Home for Breast Cancer?

Many companies have created genetic tests that you can take at home and mail in to get your results. The tests are not invasive, usually, it involves spitting into a tube and mailing it in. If your test results show that you are a carrier of the BRCA1 and BRCA2 gene, it means you might be at risk for breast cancer (in men and women), ovarian cancer in women or prostate cancer in men.

The traditional method of discussing a potential diagnosis is with your primary care physician in a medical office, or more recently by screen using telehealth, also called telemedicine. It can be overwhelming to think you might be at risk for a cancer, let alone actually be diagnosed with one.

How Accurate are At-Home Genetic Tests?

Regarding the breast cancer risk test, the results do not tell the whole story. Breast cancer has many subtypes and these direct-to-consumer tests do not test for the entire range of breast cancers. Most only test for the top three most well-known and researched types of breast cancer. Your test results could leave you with the impression that you are not at risk for one of the lesser-known breast cancer subtypes.

“Consumers can now have direct access to certain genetic risk information,” said Dr. Jeffrey Shuren, director of the US Food & Drug Administration (FDA) Center for Devices and Radiological Health in a news release.1 “But it is important that people understand that genetic risk is just one piece of the bigger puzzle, it does not mean they will or won’t ultimately develop a disease.”

Johns Hopkins University wants consumers to know a few things:

  • Genetic tests show traits but are not diagnostic.
  • Companies sell the data to third parties for research.
  • Your test results might affect your ability to qualify for life, disability, and long-term insurance.2

Breast Cancer CellWhat are Breast Cancer Subtypes?

Dr. Giuseppe Curigliano, Co-Chair of the Division of Medical Oncology at the European Institute of Oncology explains the different breast cancer subtypes in detail in a Patient Power interview. This is not the full list, which could include thousands of genetic variants in BRCA alone, but it gives you an idea of the different ways this one cancer type can express itself.

So, although these tests may be intriguing, you need to know that your results might not give you the full story. Your best bet is to ask your primary care doctor if you need certain tests performed by a pathologist based on your medical history. If you do not know your family’s history, genetic tests can be a starting point for learning about your medical history. This can be helpful for people who were adopted and for their children.

What Do I Do With This Cancer Information?

This is the ultimate question. Perhaps you are a man and the test showed that you are at risk for prostate cancer. This is really a first step, but not a decision point. Finding a genetic counselor to help you sort through the results would be a good next step to take. Also, you’ll want to meet with your primary care physician who can recommend an oncologist. Depending on the next round of diagnostic tests, you may be one of the lucky people who can live in the “watchful waiting” world, instead of rushing into a treatment plan right away.

What If You Already Have Cancer?

A new study is seeking to recruit African American men who have recently been diagnosed with prostate cancer to serve as a springboard to understanding tumors at the genetic level. This team effort from three prominent research institutions is very different from the direct-to-consumer tests. This effort seeks to create more equity in health outcomes across different patient populations. Also, these patients have already been through one of the scarier parts of cancer care, getting that official diagnosis. They already know that they have cancer and are likely partnered with an oncology team who can help them with the next steps.

Was this article helpful? Please share across social media. Looking for more Patient Power information? Sign up for e-news and have the latest in cancer care sent right to your inbox.

~Lauren Evoy Davis 


1FDA allows marketing of first direct-to-consumer tests that provide genetic risk information for certain conditions. US Food & Drug Administration.

2Five Things to Know about Direct-to-Consumer Genetic Tests. Johns Hopkins Medicine.

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