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How to Protect Your Genetic and Health Data When Using an At-Home Test

Before mailing a saliva sample or uploading results, learn what an at-home testing company may collect, how to assess sharing and deletion terms, and why HIPAA may not apply to a direct-to-consumer account.
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Before mailing a saliva sample or uploading genetic results, check what a testing company collects, who can access it, how long it keeps each copy, and what deletion actually removes. A direct-to-consumer test is not automatically covered by HIPAA, and genetic-discrimination protections do not cover every type of insurance. You can reduce risk by making an informed consent choice and securing the account tied to your results.

What data can an at-home test collect?

A consumer genetic test may use a saliva sample to report ancestry or the likelihood of certain health conditions. The privacy implications can extend beyond the physical sample and the report: a provider may also collect account identifiers, family or health details, payment information, and app data. The FTC’s consumer guidance on direct-to-consumer genetic tests explains that these tests can involve sensitive genetic and health information.

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Treat both the genetic data and the account attached to it as sensitive identifying information. Before ordering, read the provider’s current privacy policy, consent settings, and retention terms. Do not rely on a general promise to keep data “private” or “secure”; the meaningful details are what the company collects, who may receive it, and what controls you can use.

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What to check before sending a sample

Review the terms and, if anything important is unclear, ask the provider directly. Look for answers to these questions:

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  • Collection: What is collected besides the sample and test result, such as account, family, health, payment, or app information?
  • Access and sharing: Which laboratories, contractors, researchers, or commercial partners can receive the data, and for what purposes?
  • Research consent: Is participation optional and separately consented, or bundled with another choice? Can you withdraw consent, and what happens to data already used or distributed?
  • Retention: How long does the company keep the physical sample, raw genetic data, interpreted report, account information, and backups?
  • Deletion: How do you request deletion, what copies or records may remain, what exceptions apply, and will you receive confirmation?
  • Policy changes: Can the company change how it uses data already collected? How will it notify customers, and will new consent be required for material changes?
  • Account controls: Does the service offer multifactor authentication, access-management settings, and data export or deletion controls?

Read the current terms before testing rather than assuming that a policy or consent choice will remain unchanged. Check what the provider says about previously collected data if its policy changes.

What does “delete my data” mean?

Deletion can refer to different things. A company might remove an account while retaining reports, raw genetic files, backups, or a sample held by a laboratory. Ask separately about each type of copy and whether a request reaches contractors and labs. Also check the stated exceptions and whether the provider confirms when deletion is complete.

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An FTC enforcement matter shows why the distinction matters. In June 2023, the FTC alleged that 1Health.io, formerly Vitagene, left sensitive genetic and health information unsecured, misrepresented deletion and security practices, and retroactively expanded categories of third-party sharing without adequate notice or consent. The FTC said its complaint described nearly 2,400 health reports and raw genetic data for at least 227 consumers in publicly accessible cloud storage. These are allegations in a specific case, not findings about every testing company.

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The FTC also described proposed settlement terms that included affirmative express consent for third-party sharing of health data and instructions to contract laboratories to destroy samples retained longer than 180 days. The announcement is an example of enforcement involving promises and data handling; it is not a guarantee that every provider follows the same practices. See the FTC’s June 2023 announcement about 1Health/Vitagene.

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Does HIPAA protect direct-to-consumer genetic data?

Not necessarily. HHS says, “Yes, genetic information is health information protected by the Privacy Rule.” But HIPAA protection applies when the information is individually identifiable and maintained by a covered health care provider, health plan, or health care clearinghouse. The fact that information is genetic or health-related does not, by itself, establish that a direct-to-consumer testing company is covered by HIPAA.

Ask whether the test is being ordered directly by you or through a covered healthcare relationship, and which organization holds each record. A healthcare provider’s records and a testing company’s consumer account may have different protections. HHS explains the conditions in its FAQ on whether the HIPAA Privacy Rule protects genetic information.

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  • Fast Results: Your samples will be returned via USPS within 7 business days. Your results will be available within 1-2 days after your sample arrives at our lab, in our secure online portal.
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Other rules may be relevant. The FTC says the FTC Act requires companies to honor express or implied privacy promises and maintain security appropriate to the nature of the data; its Health Breach Notification Rule may apply to some businesses. Whether a particular rule applies to a particular provider depends on the business and its data flows. The FTC’s health privacy and breach-notification guidance describes this framework.

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What genetic-discrimination protections do not cover

In its consumer guidance, the FTC says the Genetic Information Nondiscrimination Act (GINA) provides protection against genetic-information discrimination in employment and health insurance, but does not apply to disability or long-term-care insurance. Do not treat GINA as protection against every insurer or every use of genetic information. The cited guidance does not establish how every state law or individual policy applies.

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How to protect the account and results

Protecting the sample is only part of the task; someone who gains access to the account may also see reports or other linked information. Use these practical safeguards:

  • Choose a unique password that you do not use for email or other accounts.
  • Turn on multifactor authentication if the provider offers it.
  • Secure the email account used for registration, since it may be used for password resets or account notices.
  • Avoid downloading or sharing raw genetic files unless you have a clear reason; understand where a downloaded copy will be stored and who can access it.
  • Review sharing and research settings periodically, and use available access, export, or deletion controls when needed.

The FTC has documented security failures involving genetic and health data, including the allegations in the 1Health/Vitagene matter. That history is a reason to check a provider’s current controls and promises, not evidence that every provider has the same weakness.

How to compare providers without a “most private” claim

No provider-to-provider privacy comparison is established here, so there is no basis for naming a most-private test. Compare the terms directly, using the same questions for each provider:

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  • Whether research and third-party sharing require a clear, separate choice.
  • Whether the policy distinguishes the physical sample, raw genetic file, interpreted report, account details, and backups.
  • How deletion works, including lab-held samples, contractor copies, exceptions, and confirmation.
  • Whether multifactor authentication and useful account controls are available.
  • Whether the test is direct-to-consumer or part of a covered healthcare relationship, and which entity holds the information.
  • How the company handles policy changes and previously collected data.

Terms and laws can change. For this U.S.-focused guidance, the FTC’s consumer alert and enforcement announcement date to June 2023; HHS last reviewed its cited FAQ on December 28, 2022. Check the provider’s current policy and current official guidance before making a decision.

Product prices and availability are accurate as of the date/time indicated and are subject to change. Any price and availability information displayed on Amazon at the time of purchase will apply.

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