By: Daniel Riconda, MS, CGC
Reviewed by: Kenny Wong, MS, CGC on May 22, 2026

If you use AI to explore genetic information, a genetic counselor can help you evaluate whether the response is accurate, complete, and relevant to your situation.

Many people are turning to AI tools when they have questions about health information, including genetic test results. It may be tempting to ask a tool like ChatGPT or Claude to explain what those results mean. Before doing that, it is important to understand two things: AI tools can make mistakes, and sharing genetic information with an AI tool may raise privacy questions for you and your family.

Where AI may help, and where it can fall short

AI tools may be useful for learning general information about genetics, such as what certain terms mean or what questions to ask your healthcare team. However, they may not have the full context needed to interpret your personal genetic test results, including your medical and family histories and the reason for testing. Because genetics and genomics are complex and highly personal, talking with a genetic counselor or another healthcare professional with expertise in these areas can help you understand whether the information you received is reliable, accurate, and relevant to your specific circumstances.

AI-generated answers may sound confident even when they are incomplete, outdated, or incorrect. Genetic test results often depend on details such as the specific gene, the exact variant, the type of test, personal health history, and family history. For example, the same gene may be associated with different health conditions, and the meaning of a result may depend on the specific variant identified. Without that context, an AI tool may miss important limitations or provide an explanation that does not apply to you.

Protect your genetic information before you share it with AI

If you choose to use an AI tool for health-related purposes, review the tool’s privacy policy before entering genetic information. Look for whether your information may be stored, shared, used to train or improve the tool, or deleted later. Two federal laws, HIPAA and GINA, are often discussed in relation to genetic information, but it is important to understand what they do and do not protect before sharing genetic information with an AI tool.

• HIPAA (Health Insurance Portability and Accountability Act), passed in 1996, sets rules for how covered healthcare entities and their business associates may use and disclose protected health information.¹ However, HIPAA may not apply when a consumer personally enters health or genetic information into a public AI tool.
• GINA (Genetic Information Nondiscrimination Act), passed in 2008, protects people from certain types of genetic discrimination in health insurance and employment, but it does not cover every situation where genetic information may be used.²

Your genetic information is unique to you (unless you have an identical twin), but it may also reveal information about your relatives. When you upload your raw genetic data, for example, from a direct-to-consumer test, into an AI-based tool, will that information be shared with other parties without your knowledge?

Questions to ask before using AI with genetic information

Before using AI to interpret genetic information, ask:

• Am I entering general questions, or am I uploading personal genetic test results?
• Will the AI tool store what I type or upload?
• Will my information be used to train or improve the tool?
• Can I delete my information later?
• Could the information I share reveal something about my relatives?
• Who can help me check whether the AI-generated answer is accurate?
• Is there a safer way to ask my question without including my name, full test report, or raw genetic data?

How a genetic counselor can help

A genetic counselor can help you understand whether an AI-generated explanation is accurate, complete, and relevant to your personal and family health history.

NSGC has published a position statement³ on the responsible use of AI in genetic counseling. The statement emphasizes patient safety, data privacy, transparency, validation, equity, and access to care. It also notes that AI should complement, not replace, the human elements of genetic counseling.

The bottom line

AI tools may be helpful for learning about genetics, but personal genetic test results and raw genetic data require extra caution. Before sharing genetic information with an AI tool, review how your information may be stored, used, or shared. If your question involves your own results, personal health history, or family history, consider speaking with a genetic counselor or another healthcare professional who can help interpret that information in context.

References

1) Summary of the HIPAA Privacy Rule | HHS.gov

2) Genetic Information Nondiscrimination Act (GINA) | U.S. Department of Labor

3) National Society of Genetic Counselors. The Use of Artificial Intelligence in Genetic Counseling. Adopted April 29, 2026: https://www.nsgc.org/Advocacy/Position-Statements/Position-Statements/Post/the-use-of-artificial-intelligence-in-genetic-counseling

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