Purchasing Genetic Testing

What To Know

Many people want to try at-home or Direct-to-Consumer (DTC) genetic testing. These tests are convenient, affordable, and offer personal choice and privacy. However, there are additional things to know and understand.

Please note: In general, most genetic tests are accurate when performed by reputable companies. Reputable genetic testing companies are those that have met high-quality laboratory standards, such as:

  • CLIA (Clinical Laboratory Improvement Amendment) certification, which ensures genetic testing labs meet federal quality standards.
  • CAP (College of American Pathologists) accreditation, which confirms that labs follow strict guidelines.
  • FDA (Food and Drug Administration) approval, this only applies to specific genetic tests that have passed more regulatory reviews.

These certifications make sure that labs follow guidelines needed for test accuracy, reliability, and quality control. If a lab doesn’t meet these standards, the results might be unclear or misleading.

Even if you are using tests from a reputable company, the results can vary in their usefulness. Many DTC genetic tests provide limited health information and might not be detailed enough to help with medical decisions.

If you are thinking about genetic testing for health reasons, it is important to talk with your doctor or a genetic expert before and after testing. This will help you:

  • Choose the right genetic test for your needs.
  • Make sure the lab performing a genetic test meets quality standards.
  • Understand what your results mean and what next steps may be needed.

What Is DTC Genetic Testing?

In the past, you needed to visit a doctor for genetic testing. The doctor would order the test and share the results with you. Now, you can buy genetic testing online or over the phone. Many companies advertise their genetic testing services in magazines, on the radio, and on TV. These products and services are called Direct-to-Consumer or DTC genetic testing.

What Do Companies Test For?

There are many types of DTC genetic tests available. Companies may offer DTC genetic tests for health issues, ancestry, or even relationship compatibility.

How Is DTC Genetic Testing Done?

When you order a DTC genetic test, the company sends you a kit with instructions on how to collect a DNA sample, either from your spit (saliva) or by swabbing the inside of your cheek. You then send your sample back to the company. They may test it at their lab or send it to another lab. Most labs provide you online access to view your results.

What Should I Know About DTC Genetic Testing?

While some DTC tests can be helpful, others make false claims that are not supported by scientific evidence. This might not give you useful information to help you make decisions about your health.

Here are some things to consider before getting a DTC genetic test:

Privacy

  • Your test results are kept confidential or private on the company's website. However, consider what could happen if the company has issues with their website, or goes out of business.
  • The federal Genetic Information Nondiscrimination Act (GINA) says that health insurers and employers cannot use genetic information to make decisions about employment or insurance coverage. But GINA has limitations regarding life insurance, long-term care insurance, disability insurance, military status, and employer size. Learn about the full law on the U.S. Equal Employment Opportunity Commission website.

Accuracy

  • Companies that do DTC genetic testing use different methods and report on different genetic changes. For example, you could send your DNA to 3 different labs and get back 3 different results. One lab might say you’re at a higher risk for a health issue, while another lab may interpret the same results as normal risk.
  • Not all companies offer access to a genetic counselor to help you understand the testing or your results. This might lead to confusion about your results and their possible health effects. You might experience:
    • False reassurance: Your results may show that you are not at risk, when you actually could be at risk for disease.
    • Unnecessary anxiety and stress: Your results may indicate that you are at risk, when you are not.
  • Without accurate information you may:
    • Seek unnecessary medical services or therapies that are not effective.
    • Miss any needed treatment.
    • Manage medication without the help of a doctor.

Personal Readiness

  • DTC genetic testing results can be unexpected and challenging to handle. They may affect your and your family. Your doctor or a genetic expert can help you understand the testing process and what the results mean.

Company Motivation

  • Some companies falsely advertise the benefit of their tests to sell more products. For example, a company might claim that your results show you have a vitamin deficiency, and then encourage you to buy vitamin supplements from them.

What Should I Do if I Am Interested in Genetic Testing?

Talk To an Expert

If you are interested in genetic testing, talk to experts like genetic counselors and doctors. They are trained in genetics and can provide you with information about genetic tests and explain the risks, benefits, and limitations. They can also help you understand how the information can affect you and your family. Genetic experts can accurately interpret results. Find regional genetic clinic locations.

Do Not Make Important Health Decisions Based on DTC Genetic Testing Without Talking to Your Doctor or a Genetics Expert

Both genetics and lifestyle can affect your health. Your doctor or a genetics expert can help you understand how best to reduce your risk of disease.

Do Your Research Before Choosing a DTC Genetic Testing Company

Check the information on the company's website carefully. Don't hesitate to contact them with any questions. Ask if genetic counseling is included in the cost of testing. Make sure the lab is CLIA-certified (Clinical Laboratory Improvement Amendments) certified. Learn what makes a lab CLIA-certified.

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