HomeGenetics UnderstandingDtcgenetictestingWhat should I know before proceeding with direct-to-consumer genetic testing?
Back to Dtcgenetictesting
What should I know before proceeding with direct-to-consumer genetic testing?
Reviewed by Medicinsk Expert•Last updated: 2026-10-22•Dtcgenetictesting

What should I know before proceeding with direct-to-consumer genetic testing?

Before ordering a direct-to-consumer genetic test, it is essential to understand the limitations of the testing, potential privacy risks, and how results may impact your insurance coverage.

Overview

There are many things to consider before ordering a direct-to-consumer genetic test. Before proceeding, look for detailed information on the company’s website regarding their services, responsibilities, and your rights as a customer. This information, often found in the terms of use or terms of service, is a legally binding agreement. If you have questions, contact the company directly.

Testing Limitations

Direct-to-consumer genetic testing generally cannot tell for certain whether you will develop a specific disease, as many health problems are caused by a combination of genetic, environmental, and lifestyle factors. Because standards and guidelines may differ from clinical testing, results typically need to be confirmed by a healthcare provider before they can be considered diagnostic or used for medical decisions.

Questions to consider regarding testing companies include:

  • Are the tests regulated by the U.S. Food and Drug Administration (FDA)?
  • Does the laboratory have certification from the Clinical Laboratory Improvement Amendments (CLIA), the College of American Pathologists (CAP), or the Association for the Advancement of Blood & Biotherapies (AABB)?
  • Is the company clear about what a test can and cannot tell you?
  • How many genetic variants are tested for each condition?
  • Does the company discuss the need for additional testing to confirm results?
  • Does the company have experienced genetics professionals, such as medical geneticists and genetic counselors, on staff?
  • Is a consultation with a healthcare professional included in the cost?
  • Will you be notified if future research impacts your results?

Privacy Issues

Your DNA is unique, but because you share genetic information with relatives, your results may have implications for family members. It is important to understand how companies handle your data.

Questions to consider regarding privacy policies include:

  • How does the company safeguard your genetic data?
  • What happens if the database is hacked or the company is sold?
  • Can you delete your results from the database?
  • Does the company sell data to pharmaceutical or technology companies?
  • What is the company’s policy on sharing data with law enforcement?
  • Can you opt out of data sharing or research use?
  • Will you be notified if privacy policies change?

Be sure to read the company’s privacy policy, privacy statement, or privacy center before starting the testing process.

Insurance Issues

The Genetic Information Nondiscrimination Act (GINA), a federal law passed in 2008, makes it illegal for employers and health insurance providers in the United States to use the results of a direct-to-consumer genetic test to make decisions about health insurance eligibility or coverage.

However, there are important limitations to these protections:

  • GINA does not apply to companies with fewer than 15 employees.
  • GINA protections do not apply to disability insurance, long-term care insurance, or life insurance. These providers may have the right to request genetic testing results when making decisions about eligibility, coverage, and rates, unless prohibited by state laws.

Frequently Asked Questions

Look for labs that are CLIA‑certified, CAP‑accredited, or AABB‑certified. Verify that the company’s tests have FDA clearance or approval for the specific conditions they claim to assess. A reputable provider will also disclose the number of variants tested for each condition and provide evidence of analytic validity.
Many direct‑to‑consumer companies offer optional counseling sessions, either in person or via telehealth, for an additional fee. Confirm whether counseling is included in the test price or if it is a separate service, and check the credentials of the counselors (e.g., Board‑Certified Genetic Counselor).
Save a digital copy in a password‑protected file or use a secure cloud service that offers two‑factor authentication. When sharing results with healthcare providers, use encrypted email or a patient portal that meets HIPAA standards. Avoid posting raw data or screenshots on social media or unsecured platforms.
variant of uncertain significance (VUS) indicates that current evidence does not clearly link the genetic change to disease. It is not a diagnostic finding, and you should not make medical decisions based on it alone. Discuss the VUS with a qualified genetic counselor or clinician who can explain its implications and whether further testing is warranted.
Source: MedlinePlus, National Library of Medicine

MedlinePlus brings together authoritative health information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations.

kontakt@hittavard.se

Ⓒ 2024. Alla rättigheter förbehålls av juxt ab

Sök
Om ossVillkor och policyVanliga frågorKontakta oss